When Diane Stento approached A Room to Heal last summer with a request to partner together to create a new comfortable and healing space for children and teenagers staying at Danielle House, it was a perfect fit for these two local charity organizations. Over time, Diane has seen that children sometimes need a place of their own, to relax, unwind and forget their worries. She identified the lower level family/ recreation room at Danielle House to be the perfect place to create this type of space. The team of volunteers from A Room to Heal, along with local designer Judy Robilotti, and sponsor partner SEFCU, knew they could do what it took to transform the room into a great place for kids.
Some of the new elements in the room are: repainted and new carpet. A young children’s whimsical “nook” with comfy pillows to encourage imaginative play and reading, and an air hockey table allows kids to engage in fun activity. Children can use this space to play, draw, make noise, or to sit and relax while watching a movie. For the older kids, new ‘cool’ furniture has been added along with a flat screen TV and game system.
Jeremiah is a sweet little 3 year old with Acute Lymphoblastic Leukemia. Jeremiah has a hard time walking up and down the stairs to get to his bedroom. He would sleep and nap in the recliner in living room much of the time because it was easier for him, the living room space was chosen for his healing environment because of this. The room needed to be lighter, brighter and more sterile to provide him with the clean air he needs to stay healthy.
The floors of the room were refinished, walls were painted off white to brighten the space, and lighter window treatments were added to let in more natural light. Laura Ellis helped with the layout of the space and Ellis Brothers furniture donated furniture for the room. An air purifier was donated by Rabbit Air, a company in California. A fun rug was added, so Jeremiah would have a place to play with his trucks.
The space is now a place where Jeremiah can play, relax, enjoy his family, and heal!
The Endicott Rotary and A Room To Heal teamed up to create a healing environment for 9 year old George. George has osteopenia, a condition where bone mineral density is low, and speech apraxia which causes difficulty coordinating the movements needed for speech.
The family's living room was renovated as George spends most of his time there. New flooring was installed courtesy of Darpino Rugs. The BAE Employee's fund generously donated $3000 to offset the cost of an air conditioning unit.
We would like to thank the Endicott Rotary for donating the funds needed for this makeover along with volunteer hours to complete the transformation. A special thank you to the project managers Colleen McMahon and Kristine Cunnigham for their handwork and dedication.
Carly is a beautiful, happy, and fiercely determined 4 year old girl with a diagnosis of Spina Bifida and shunted hydrocephalus. Carly was also born with club feet. Carly and her family are still grappling with the diagnosis that she will never walk and refuse to give up. They hope that Carly will someday be able to walk with supports. Carly has undergone multiple surgeries and therapies in her short life, the most recent one being a hip reconstruction that left her in a body cast for three months. Despite her limitations, Carly is affectionate, intelligent, talkative, sweet, and lovable. Her parents, siblings, and extended family are all devoted to her care and happiness. Carly resides in Binghamton with her family and attends HCA programming for pre-school. Carly is learning to get around in a gate trainer and will soon be fitted for a wheelchair.
Two years ago, Carly and her family came to A Room to Heal facing a significant dilemma. Their home was not accessible for Carly as she grows. Her parents and siblings were carrying her up and down stairs to her bedroom and the only family bathroom.
A Room to Heal identified Carly as a child that would benefit considerably from the healing environment the volunteer organization can provide. A healing environment will make a significant difference in Carly's and her family’s lives both physically and emotionally.
A Room to Heal, Ray Croteau of the City of Binghamton Housing department, and Chris Ostrowsky of Ostrowsky Builders LLC provided a space for Carly to grow, heal, and be able to become as independent as possible. The space included a bedroom for Carly as well as an accessible bathroom that the family can use as well - all on the main floor of the house. With the help of local interior designer, volunteers, contractors, and donations from local businesses we knew we could make a difference in the lives of Carly and her family that will last a lifetime and help encourage Carly’s independence.
Seeing that sweet little face come into her bedroom for the first time and exclaim, “This is MY room!” made all the work worthwhile.
Grace, who shares a room with her sister, received a bright orange, pink & zebra healing room complete with a dance floor (disco ball and all!) & X-Box game system to help with her physical therapy. The room also provides the two girls with plenty of storage, a seating area for friends and family, and a dance area.
A Room to Heal volunteers recently completed a healing room for 9-year-old Grace. Grace is diagnosed with Hydrocephalus and has endured 50+ brain surgeries and even a stroke. She has 5 brothers and sisters ranging in age from 10 - 18 who all live with their parents in Apalachin, NY.
A special thank you goes to UHS who provided sponsorship for the room, as well as Grace's Family who raised money at the recent A Room to Heal Pajama Run. Another thank you to the Room Project Coordinators: Loreta Paniccia & Patrick Hollenbeck (and their children: Monica, Aurora and Victoria) and Liz DiVivo
Kashawn, a 14-year-old 8th grader at Susquehanna Valley Middle School, received a healing bedroom on May 9t,h 2012, right after he returned home from his Make-A-Wish trip to Hawaii. Kashawn, who shares a bedroom with his brother Marquis, is a courageous young man, diagnosed in October 2011 with Hydrocephalus due to a brain tumor. Having had three brain surgeries, he remains positive & grateful for the support he has received from family, friends and the community.
Kashawn was identified as a teen that could benefit, emotionally and physically from a healing environment in his bedroom. A team of volunteers led by Vestal residents Linda Salomons & Kristin and Chris Mahoney transformed the small bedroom into a calm & relaxing sanctuary. In particular, certain elements like an iComfort Sleep System & a motion adjustable foundation will allow Kashawn to recline and sleep comfortably to alleviate pressure on the shunt in his head. Special donations came from numerous artists, businesses and families. Special thanks goes to Excellus, the New York Giants organization, Tom & Jerry’s Sports Trips, Vestal Hills Country Club, Tim Green, and Tyler Perry Studios. In addition, local people (other than the wonderful volunteers) who added their 'touch' to this project were Nikki Corgel, John Ed Bon Fed, the Huff Family, Kelsey Briggs, Viktor Shevchenko & Our Dreams Photography.
Kashawn’s healing bedroom makeover consists of, among other additions, adding color to the room freshly painted walls, new beds for both boys that suit their growth (XL), window treatments, much needed storage & bedroom furniture, sports memorabilia of their favorite teams, an inspirational quote by Dr. Martin Luther King, Jr., and some special autographed items from Kashawn’s favorite sports team – the NY Giants. ARTH also surprised Kashawn with a new laptop and flat screen TV for him to watch his favorite star Tyler Perry on the many DVD’s donated by Tyler Perry Studios. Tyler Perry, known for his hilarious character Madea, is an American actor, director, screen and playwright, producer, author, and songwriter.
A Room to Heal Project Coordinators Laura Sehn and Kara Mulcahy completed a room for Halayna Jones, a 7 year old girl with Mitochondrial Disease. Mitochondria generates energy for your cells and because her mitochondria aren't working correctly, Halayna has a weak immune system and low energy levels. She also has to have a feeding tube. Halayna spends a lot of time resting & watching TV when her energy is low. She shares a room with her older sister, 10 year old Haley. Halanya and Haley are "girly girls", they love purple, pink, & aqua, and anything that sparkles!
We wanted to create a room that was bright and cheerful, but also allowed Halayna to rest and relax. The girls got new bunk beds, an LCD TV and DVD player, a cool "book nook" under the bed with a big bean bag pillow, and an art wall where they can display all of their drawings. The carpet was replaced by Dave Germick, owner of Stanley Steamer, who worked with the homeowner to choose a really perfect Berber carpet that would be durable and hide any messes. The girls loved their new room, and so did their dog, May, who was the first one in the room to check it out!!
Maddie is a kind & considerate teenager living with Mitochondrial Disease. The disease, which is characterized by the failure of the energy producing structures that serve as the cells' "power plants," has left Maddie with little energy & substantial muscle weakness. Unfortunately, due to fatigue & medical complications, she is unable to attend school & spends the majority of her time in her bedroom.
The goal of this project was to create an environment that took Maddie's medical needs into account, while allowing her warm personality and various interests to shine through. The healing makeover included a fresh coat of paint, a new bed better suited to her needs, and blackout shades to conceal light when she naps during the day. Audrey Hepburn, the Beatles, and inspirational quotes adorn the walls and help to bring out a retro-style feel in keeping with Maddie’s interests. ARTH also surprised Maddie with a new laptop aimed at providing social support by connecting her to her friends and to the outside world. The laptop, complete with speech recognition software, will make it easier for Maddie to complete assignments and communicate when she is tired.
A Room to Heal was proud to create it's 3rd community project in the Pediatric Playroom at Lourdes Hospital in Binghamton -- on the hospital’s Pediatric Unit, 2 Ross. The room was newly painted with a beautiful canvas mural created by local artist and volunteer Cindy Rotella. The design of the space also includes a comfortable new couch, bean bag chairs, a flat panel television with a movable game station and a Thomas the Train table for interactive child play. SEFCU generously donated the funds to complete this project. Volunteers from A Room to Heal, SEFCU employees and Lourdes staff all helped to complete this wonderful space. The hope is that the new children’s & family room will provide a place to relax and promote the healing process.
Matthew is a happy and vibrant five year old that was born with hypoplastic left heart syndrome and cerebral palsy. He has already undergone two open‐heart surgeries and is waiting to have a third. Despite his limitations, Matthew is affectionate, outgoing, sweet, and lovable. He loves Mickey Mouse, puzzles, animals, and the color blue. Matthew lives in Endwell with his older brother Nick and his mom and dad and attends Homer Brink Elementary School.
Matthew spends most of him time in the family room either with his family or receiving physical therapy several times a week. Unable to walk, Matthew gets around in a gate trainer and wheelchair. A Room to Heal identified Matthew as a child that would benefit considerably from the healing environment the volunteer organization can provide. A healing environment will make a significant difference in Matthew's life both physically and emotionally.
With the help of a local interior designer, organizer, volunteers, and donations, A Room to Heal created a healing living room environment to help maximize Matthew's independence and encourage his learning.
When Megan was 15 years old, she was diagnosed with an ovarian germ cell tumor, one that was extremely life threatening. Once diagnosed, she and her family immediately travelled to Sloan Kettering in NYC to have the tumor removed before it might rupture. That was followed by chemotherapy treatments.
A Room to Heal felt that Megan deserved a loving, lasting and stress-free healing environment in her bedroom. Megan is a very creative young woman and enjoys theatre and scrap booking.
Yvonne and Lauraine, both mothers of boys and A Room to Heal volunteers, loved the experience of designing and coordinating this room project for Megan and her 5-year-old sister Olivia. They felt the bedroom needed more color, more warmth and needed to reflect the girls, their interests and personalities.
Megan is an amazingly vivacious and artistically talented young lady. She is active in musical theater and is a skilled artist. The desk used for Megan's room has a glass top, which was perfect to display her artwork and Playbills. Megan’s most treasured pictures were framed and placed by the desk, to create an inviting workspace for her to use her brand new laptop computer.
Although the bedroom was small, the volunteers were able to make it full of light and color. The room color combines orange, pink and a touch of lime green, complimented by zebra print blankets and a matching beanbag chair. New white furniture was added, including two white dressers and a bookshelf.
Megan was overjoyed when she walked into the room. She was so excited to see all of her favorite things blended into the room makeover. One of the biggest surprises for her was an autographed picture of Kristin Chenoweth, one of her favorite Broadway performers and actresses. Megan also loved the shelving and desktop corkboard. As quoted by Yvonne, co-project coordinator, “I can see Megan and Olivia spending lots of time in their new room filling it with their own personalities and making many memories!”
A Room to Heal unveiled two new rooms, sponsored by Excellus, at the The Family & Children’s Society in Binghamton. The children’s therapy room "make-over” was inspired by the colors and patterns of MacKenzie-Childs and provides a happy place for therapists, parents and children to learn and develop. The children's waiting area provides an interactive and stress free environment for children that is filled with books, developmental toys and imaginative playthings, which includes a place where families can sit and wait comfortably with their child.
The Family & Children’s Society is a leading community provider of human services in the Southern Tier. With a goal of helping people to improve the quality of their lives, The Family & Children’s Society is committed to renewing hope for those who face challenges due to troubling circumstances. The Society provides assistance, care and counseling to strengthen and support individuals and healthy relationships.
The new building honors Esther W. Couper who founded the agency in 1941. The agency is renaming the Main St. building in her memory in recognition of the outstanding service and dedication she provided to the children and families of our community.
Torie is a sweet 16 year old who was born with Mitochondrial disorder. Mitochondrial myopathies are a group of neuromuscular diseases caused by damage to the mitochondria-small, energy producing structures that serve as the cells “power plants”. Torie uses a wheelchair. She attends school when she can, although she is often not feeling well enough to get there. Torie plays in the marching band and loves all kinds of music. She loves to read. Torie has a beautiful smile and sparkling eyes.
A Room to Heal completed a bedroom makeover, to make Torie's bedroom a more comfortable space for her to spend time. Torie requested a room with a music theme. We decorated the walls with beautiful, musical decals and framed record albums from her dad's extensive classic rock record collection.
Everything used is accessible for Torie's use, including a new remote control ceiling fan and light. With the help of our wonderful volunteers, we were able to create a healing environment for Torie.
Alecia is a 4 year old little girl born with global developmental delays. She was diagnosed with Arthrogryposis, generalized Hypothonia. She lives with her mom and dad in Vestal, where they have lived for about a year and a half. Alecia is non-verbal and spends most of her day with her parents in the family room. Although she can’t talk yet, everyone knows her eyes light up when she sees squirrels, watches birds out the window, and feels a cool breeze on her face.
Because the family lives in an old home, it needs many updates in order to make it more accessible for Alecia. The hope is that when she starts using her adaptive Gait walker (trainer), the family room can be a playground for her, with easy access all around. A Room to Heal has identified that they can help by making this family room more accessible, safe and friendly as Alecia grows and starts moving around. Carpeting was pulled up, nice laminate floors were installed, a new light and ceiling fan were added, new heating base boards were added to the entire room through a generous donation from a local business. The entire room was painted providing a calming and comfortable environment. With the help of a local interior designer, volunteers and donations from local businesses, we know that we can make a difference in Alecia’s (and her family’s) life.
Jason is a sweet, smart, playful, and independent 7 year old boy living with Prune Belly Syndrome and Renal Disease. Prune Belly Syndrome is an extremely rare birth defect that affects about 1 in 40,000 children. It is believed to be a multisystem disease that involves the poor development of the abdominal muscles, cryptorchidism, and urinary tract problems. Consequently, Jason requires nightly dialysis treatment until he receives a kidney transplant.
Jason is fortunate enough to be surrounded by a loving and supportive family. Jason’s grandfather has worked tirelessly to construct a new bedroom addition off of the Miller family home to ensure that Jason receives dialysis in the clean and sterile environment it demands.
A Room to Heal knew that Jason could benefit considerably from a healing environment - both physically and emotionally. With the help of volunteers and donations from community members and local businesses, A Room to Heal was able to create a calming, clean and safe space for Jason, complete with new furniture, bedding, decor and things to play with.
Shae suffers from Dystonia, a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. Shae has several cousins who share the same disorder. Surgical treatment for Dystonia is available and Shae, along with two of his cousins have undergone that surgery and continue to be treated for it. When the symptoms of Dystonia are at their worst, the children need wheelchairs to get around.
A Room to Heal volunteers came up with a creative way to provide a healing environment for Shae, his brother and their cousins (who all live in adjacent homes in Kirkwood.) The “clubhouse” is wheelchair accessible and provides a place for the children to gather and play. Shae and his cousins can enjoy art projects, games, and a theater, all incorporated into this healing environment. With the financial assistance from SEFCU along with other fundraising efforts, the “clubhouse” is a safe and active environment for the children.
A Room to Heal project coordinators and volunteers also worked closely with general contractor, Mark Dozoretz, from Landmark Building & Design LLC, who donated his time and services.
Miranda is 14 years old and lives in Endicott, New York with her parents and brother. In the spring of 2008, she noticed a lump in her neck. After many tests, her doctors diagnosed her with Hodgkin’s disease. She immediately started treatment in Syracuse at University Hospital. After a year of check-ups and feeling well, unfortunately Miranda relapsed in August 2009 when they noticed another lump, this time in her chest. She began treatment again, but this time with four intense rounds of chemo, in-patient stays at the hospital, and four weeks of radiation.
During this time, Miranda was home-schooled. Now that she is back in school, she says it's been really rough. She gets tired very easily and homework has been stressful for her. Through it all, Miranda has stayed positive. Her parents described by her parents as feisty, easy going and as having a great sense of humor. A Room to Heal volunteers created a safe, warm and calming room in her very small bedroom. as well as set up a cooking lesson (she loves to cook! ) with her favorite foods and the generous help from Sylvana and Rick Dodd at P.S. Restaurant, and were able to attain her own "positive and up beat" song through the organization Songs of Love.
Josef is 17 years old and has Wilson’s disease. His condition was diagnosed about a year ago and he is waiting for a liver transplant. Wilson’s Disease is a genetic disorder that prevents the body from getting rid of extra copper, and over time, high copper levels can cause life-threatening organ damage.
Josef is home a lot and his current condition doesn’t allow for him to do much physical activity. His current room was very small, and given that he is a tall young man -- 6’4” – A Room to Heal felt that he could use more space and a more updated young adult room. With the help of a local contractor, we were able to break through into a storage area and enlarge his room.
Volunteers re-created Josef’s Room, painting the walls in the color of his choice, adding new bedroom furniture, mega electronics, a sofa to hang with friends and a desk area to do work. His parents agreed that this space really had an impact on cheering him up.
A Room to Heal volunteers completed a healing environment in the bedroom of Dillon Pook, a 7-year-old boy being treated for T-cell non-Hodgkins Lymphoma.
Initially when treated with chemotherapy and radiation, Dillon’s little body did not respond so well. This past summer he received a stem cell transplant at the Children’s Hospital of Philadelphia (CHOP) and is now doing very well. Prior to going to CHOP, A Room to Heal selected Dillon as a recipient of a healing room in his family’s new modular home.
Lymphomas are types of cancer derived from lymphocytes, a type of white blood cell. Lymphomas are treated by combinations of chemotherapy, monoclonal antibodies, immunotherapy, radiation, and hematopoietic stem cell transplantation.
With an empty room to work with, A Room to Heal volunteers are creating a place that fits Dillon’s likes for exotic fish and the ocean. The healing space, perfect for a boy who needs a clean and soothing environment post-transplant, will be complete with new furniture, a TV and a computer.
Funding for this project came from the 2009 Wendy’s Walk for Kids, an event designed to assist organizations whose purpose is to help children in the community realize their full potential, regardless of their life experiences and current circumstances. A Room to Heal was one of the beneficiary organizations in 2009 and 2010.
Gurshan is an adorable 2 year old boy with a twinkly smile. He absolutely loves cars! Disney Pixar Cars are his favorite but any car or truck will do. He was diagnosed with childhood Leukemia earlier this year and is undergoing treatment in Syracuse. Gurshan lives with his family in an apartment in Binghamton and shares a room with his 4 year old brother. His grandmother recently flew over from India to help while Gurshan is being treated.
A Room to Heal coordinated efforts and marshalled volunteers to transform Thomas’s room from a toddler room to a big-boys room while keeping in mind elements that will help Thomas stay healthy. The total makeover included new wall and ceiling finishes, a ceiling fan, all new furniture, bedding and accessories, and according to Thomas’ wishes -- heavily themed in his favorite baseball team, the New York Yankees.
Thomas, a 4th grader at Tioga Hills Elementary School desperately fights to stay healthy. During hot weather, the school provides him with air conditioning and air purification because he is highly susceptible to allergies, and he must constantly avoid exposure to sicknesses and germs.
Cystic fibrosis is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract. Twice each day he must do a minimum of 30-minutes of respiratory therapy, some days requiring up to two hours, take over 25 pills a day and maintain a special diet high in fat and salt to maintain body weight. Four times a year, Thomas and his family must travel to Children’s Hospital of Philadelphia for evaluations and treatment.
A key element in keeping Thomas healthy is a good night’s sleep in a healing environment that is warm, comfortable and calm. His new room is now a safe place for him to relax with a friend, play his guitar or read books. Our hope is that this new room will make a difference in Thomas’s life and help to make his illness more bearable.
Thomas's room project was funded by Adam and Kim Weitsman, with generous gifts also coming from Raceline Direct, Tom and Jerry's Sports trips, 3i Graphics & Displays, Yastrzemski Sports, local families AND The New York Yankees.
A Room to Heal coordinated efforts to create a healing environment for 18-year-old Ryan Bibbins in Chenango Bridge. Ryan was diagnosed with Hepatosplenic T-cell Lymphoma. He has been through a lot over the past two years including a stem cell transplant in the summer of 2009 at M.D. Anderson in Texas. He continues to feel the effects of his treatment both emotionally and physically. Because Ryan has been feeling the effects of his diagnosis and treatment for so long, he yearns for a relaxing, masculine, quiet space where he can unwind, do his homework, listen to music and play video games.
A Room to Heal volunteers worked with Ryan to come up with a theme idea for his room and decided on an Asian-style bed room incorporating one of his favorite hobbies: reading and collecting the Fruit Baskets "Japanese" Comic Book Series. His restful nights should be a thing of the past with a new bed frame, mattress and memory foam mattress cover and pillows. One of the organization’s board members’ nephew also sketched and painted a replica of the Fruit Baskets Comic Book characters to hang on the wall.
Christine was referred to A Room to Heal by her CompassionNet Case Manager. She lives with her parents in Binghamton, NY and is being treated at Upstate Medical for Cystic Fibrosis, as well as some accompanying medical issues.
Christine often sleeps on a recliner chair in her family room because of easy access to her medications and frankly, because she has a hard time walking up the steps to her bedroom due to her condition.
A Room to Heal worked with Christine and her family to re-create the Family Room in her home, so that it is a more comfortable environment for her to hang out and do the things she enjoys doing, like reading and watching TV. In addition, a goal with the room was to provide nice storage furniture to "hide away" her medications and medical equipment. Christine also received a brand-new laptop computer so she can more easily communicate with her friends.
Stephanie is 20 months old and lives in Binghamton. She was born with multiple medical problems, including pulmonary hypertension and a hole in her heart. She is on continuous oxygen and cannot eat solid food. Stephanie is adorable and so happy, but unfortunately her chronic medical condition has taken its toll on the family unit.
Stephanie’s home is a very busy one. Her parents Carline and Joey are not only “catching up” with life as they handle all Stephanie’s medical needs, but they have four other children as well.
Instead of creating a specific room for Stephanie, the organization has determined that creating a healing environment throughout the house will help both her and her family better adjust to her on-going critical needs as well as the rest of their family.
A Room to Heal created a healing environment for Allyson (Ally) this past weekend. Ally was originally diagnosed with Ewings Sarcoma cancer in 2003 at the age of 13. She went through a lot at that time, and unfortunately, just when she was starting Broome Community College, at age 18, she relapsed. Her left lung collapsed for the third time that year.
Ally’s treatments of chemotherapy tire her out and many times keep her in bed for days. She continues to remain as upbeat as possible. Ally just stated another semester at BCC majoring in Music Education with a minor in Music Industry. Her current interests are music, writing, photography and history, along with going to concerts to see her favorite bands -- Hey Monday and The Academy Is…
A Room to Heal created a safe, warm and calming haven for Ally in her bedroom. With the help local interior designer Angela Kehoe and "her co-hort" Beth Shumaker, as well as volunteers and donations from local businesses, A Room to Heal created an "edgy" and perfect place for Ally - making a difference in her life they will never truly know. Hopefully, with our help we have made her illness just a little bit more bearable. Her aunt described the room, "You really captured the essence of Ally." Yeah!
When Rachel Polhamus was an infant, less than a year old, she was diagnosed with bilateral retinoblastoma, a very rare form of cancer in the eyes that typically affects young children. The doctors found tumors in both of her eyes – her right eye much worse than her left. Ever since then, Rachel has been treated at Children’s Hospital of Philadelphia (CHOP). Her team of specialized doctors at CHOP and Wills Eye Institute have managed to save her life and up until just recently, miraculously both of her eyes.
Volunteers with A Room to Heal created a healing environment for two brothers and their sister in Endicott, NY. Ethan and Adam, ages 6 and 3, live with their mother and 13 year- old sister. Both boys suffer from Chiari Malformation, a genetic disorder that is structural defect in the cerebellum. Ethan, the older boy, suffers from Hydrocephalus, an excessive build up of fluid on the brain and has a shunt in place to alleviate some of the symptoms. He has already had several surgeries to reduce the pressure of his cerebellum on the brain stem. Some of the symptoms that affect Ethan’s daily life are difficulties with fine motor coordination, dizziness, muscle weakness and sleep apnea. Adam is in the early stages of the disorder and currently going through a lot of major sensory issues. As a result, he does not sleep at all. Both boys face multiple surgeries in the future to help manage the disorder. This project encompassed the entire upstairs of the home including two bedrooms and a half bath. New floors, windows, walls, light fixtures and bathroom fixtures were installed to make this a truly healing environment for the boys.
The family gathering room in the pediatric unit at Wilson Medical Center got an “Extreme Makeover” thanks to the generosity of local daycare provider Suellen Sheard, UHS and WIVT-TV, the local ABC affiliate which airs the national Extreme Makeover television series. The room was unveiled in late May 2009. The project was enhanced by the work of five local artists who created a "woodland forest" theme ambiance with their talent and creativity. The room also included new flooring, comfortable new furniture, a flat screen television, and a computer. Several local businesses, including Wendy’s, Video King and Pullano Physical Therapy donated towards the project.
Rosaly is a 13-year-old young woman who was diagnosed in October 2008 with Lymphoblastic Lymphoma, a rare form of non-Hodgkin lymphoma. This type of cancer is a high-grade lymphoma, one that is fast-growing and needs prompt treatment.
Rosalyn is being treated at Upstate’s University Hospital’s Center for Childhood Cancer and Blood Disorders and goes back and forth regularly from her home in Binghamton to treatments of chemo and other medicines in Syracuse. She often misses classes at St. James School because of fevers, feeling sick and having to be overnight for treatment in Syracuse. Rosaly has 4 siblings and shares a room with her 14-year-old sister. However, at the time A Room to Heal volunteers met with Rosaly, she often slept in her parent’s room or elsewhere because she did not feel comfortable, relaxed and warm in her own bedroom.
A Room to Heal volunteers created a safe, warm and calming haven for Rosaly in the bedroom with her sister. With the help of a local interior designer, a local quilter's guild, other artists and volunteers, Rosaly and her family were overwhelmed with the final outcome. She and her sister LOVED their new room and spent a lot of time walking around and looking at everything. The room was complete with new windows and door (to an outside porch) beautiful colored paint to create a soothing and calming environment, x-long beds to fit the tall girls, lots of storage and very sophisticated decor - perfect for teenagers. Volunteers hand-made wall art, collages and framed special quotes. We know that we were able to make a huge difference in Rosaly’s life and make her sickness just a little bit more bearable.
Emery - April 2009
Emery and his twin brother Avery were born at a healthy weight. However, soon afterwards, their parents learned that Emery was denied adequate oxygen and nutrition during the last month of pregnancy. He had suffered a stroke, and his parents, Abi and Jake, were told he would not live very long. Well, he is a surviver and A Room to Heal volunteers were able to visit the family and bring joy to their lives.
Just when little Emery was about to turn 6 years old, he was revealed his new room. He was all smiles when he entered the room with newly painted walls, a new plastered ceiling, a new window and brand new pergo flooring. Volunteers included shelving that will make it easier to store his things, as well as an air purifier, a new therapeutic chair for Emery and a sound machine. He now has a humming bird feeder right on his new big window to enjoy. What a miracle it was to share this precious time with such a wonderful family.
Nine-year old Jacob was diagnosed with Adrenal Leukodystrophy in September 2008. With leadership from board members Laurie and Ron Abess, his room was transformed! Following a new bedroom addition for Jacob done by his uncle, the room now allowed for a wheelchair and easy access from the kitchen.
Jacob’s diagnosis is heartbreaking and is depicted in the movie Lorenzo’s Oil. The disease usually presents in males age 5-10 years old with a gradual disturbance in gait and slight intellectual impairment. There is usually rapid progression with hypotension, seizures, visual complaints, and difficulty in swallowing appearing with time. Abnormal skin pigmentation or other signs and symptoms of adrenal insufficiency may become apparent before CNS symptoms. In some cases, adrenal symptoms never appear.
Room to Heal donated some of the supplies needed to complete the project and created a wonderful healing space for Jacob. The theme focused on the New York Giants, which included a fat head of Eli Manning, a new bed with comfortable bedding, and a reclining chair for mom and dad. In addition, Jacob received a 27-inch flat panel television donated by the Matthews family and a signature piece of art donated by Susan Kerr which read, “I will Survive.”. Volunteers spent the week leading up to Christmas completing this room.
A Room to Heal was so happy to have had the opportunity to meet this wonderful boy, he was able to appreciate his new room, he told us that he dreamed of this room. Jacob's Smile could light up a room and his hugs of appreciation will not be forgotten.
Eight-year-old Mason Markosky got a new room to make his life a whole lot easier. Because Mason was born at 26 weeks gestation, he has had multiple complications his whole life. A Room to Heal volunteers met with Mason and his family to create an adapted bedroom on the family home’s first floor, a room specifically designed for easy access and adjustable for Mason and his day and night caregivers.
Mason is described as a loving soul who has a huge heart and a great sense of humor. He adores his three brothers and sister. He relates as a typical 6-year-old might, but without the ability to produce verbal feedback. He is using a Dynavox device to communicate and often uses sign language. Mason has a tracheostomy and is 100% tube fed. He has scoliosis and he is small in stature. He has recently begun to walk on his own and is very proud!
With the funding and support from local individuals and businesses, volunteers, along with a local contractor have been able to create a healing environment: a private area for Mason, and space for his evening nurse to care for him. A sound-proof closet has been installed, a place where Mason’s loud equipment can be closed away from the peaceful environment. New walls have gone up, new windows have been installed, and the flooring has been replaced. The room is painted and decorated with the theme of Mason’s favorite children’s story, “Brother Bear.”
Mason's room could not have been accomplished without the generous support from Keith Sturek, owner of KGS Construction (h) 607-729-1373 (cell) 607- 621-8634.
Alexander (Alex) is a 5 year-old kindergartener who lives with his parents and grandparents in Binghamton, NY. He has a very rare disease, Dyskeratosis Congenita (DC), that affects 1 in a million people worldwide.
Anna is 2 years old and lives with her family in Binghamton, NY. Anna was born with Partial Trisomy 8P, a genetic disorder which affects her level of independence. Anna is fed intravenously, and has physical limitations and global delays. She has therapists who visit with her at home, and she also attends the Handicapped Children’s Association (HCA) twice a week. Anna has a lovely and contagious smile which can light up any room!
A Room to Heal chose Anna as a recipient of a healing environment – to move her from her crib located in the dining room and put her in a big girl (hospital) bed in a BRAND NEW bedroom. The room is themed around the favorite children’s book “Miss Spider” and is adorned with ladybug and garden decorations.
With a generous financial sponsorship from the SEFCU Foundation, and the labor and amazing donations of supplies from Landmark Building & Design LLC, volunteers re-created Anna’s 1st-time-ever bedroom. The room was stripped and painted, a new handicap accessible doorway was constructed for easy access to the kitchen and bathroom, and a new window, lighting and carpeting were installed. Anna’s room consists of new furniture, including a medical table to make her procedures more comfortable, a homemade quilt, music and sound machine, new lighting and ceiling fan and a place for mom to organize all of Anna’s medical and feeding supplies.
Anna’s Room was completed on Friday, June 13th and family, friends and volunteers gathered for the ROOM REVEAL at 7pm that evening. We have never seen Anna so enthusiastic and stimulated as when her mother wheeled her into her new room. It was unbelievable! She looked around, smiled and was mesmerized by the room colors of yellow, red, white and black. Many close family and friends said that the new room was PERFECT for her, "it fit her to a tee!" Thank you so much to all of the volunteers that made a difference in the life of Anna and her family!
Scott Knapp is a sweet, lovable, 4-year old boy living with his Mom in Port Crane, NY. Scott loves many things that most 4-year-old boys do, but Scott suffers from an extremely rare seizure disorder called Dravet's Syndrome. Scott started having seizures when he was only a few months old, and he continues to have multiple seizures every week. Seizures can sometimes be triggered by things such as light, temperature extremes, and commotion. Scott's condition is complicated by asthma and respiratory disorders. As a result of the Dravet's Syndrome, Scott's cognitive and motor skills have been declining and he struggles to communicate and focus his attention. Scott requires constant supervision.
With help of some ideas from Scott's physical and speech therapists, A Room to Heal was able to provide Scott with a safe healing environment where he can play and continue to work on his physical strength and practice his communication while at home. Scott's new room includes soft rope lighting, a ceiling fan and window air conditioner to control temperature, a special velcro board to help Scott maintain his vocabulary, and a board full of light switches, buttons (Scott's favorite!), and knobs to keep Scott occupied and divert him from the real ones! A soothing fish tank set up high ads to the calming effect of the room, along with a television mounted with cords (another of Scott's favorites) well out of reach.
Many thanks go out to the volunteers who contributed their time and to the Johnson City Home Depot for their donation of carpet, supplies, and even a team of painters! Also to The Window Broker for their donation of new double hung windows that can be opened without allowing Scott to crawl through the screens, and to Olum's for their reduced rates on furniture for this room and many others in the past.
Sean Shumaker is a senior at Chenango Valley High School. In 1998, at the age of 10, Sean became one of six children diagnosed with cancer in the Binghamton suburb of Hillcrest. In 2007, he celebrated his 7- year cancer free milestone. But in December 14th, 2007, Sean was diagnosed with a brain tumor, a direct effect of the radiation he had in 2000 as part of his leukemia treatment. Although the tumor was removed at Duke last month, Sean had to undergo chemotherapy and radiation treatments each day, for 6 weeks, at Upstate Medical University Hospital in Syracuse, an effort to make him well again.
As an effort to help Sean as he got well, volunteers from the local non-profit organization A Room to Heal, created a healing bedroom for Sean. Sean's older brother, Matt, generously traded his room with Sean to give him more space. HealthNow New York helped contribute financially to the room and some of their volunteers came and helped paint walls in Sean's favorite colors - orange and neon green! Beautiful masculine furniture was added to the room, along with a flat screen TV, a laptop computer and an old remote phone he requested. In addition, a Susan Kerr original painting hung saying "Standing Strong." Sean was very thrilled with his room, not knowing what to say, a bit shy.
It was an amazing experience for all who were involved and it felt really good to provide such a wonderful space for this special teenager.
Stephen Krome is 18 years old and lives in Johnson City with his Mom and Dad, sister & brother. Stephen enjoys video games, watching sports and the time he gets to spend with his family and german shepherd, Seneca.
Stephen was referred to us by Carole Rosen, a Medicaid Benefits Coordinator who has known the family for 18 years. Steven has considerable challenges with a brittle bone condition, called Osteognesis Imperfecta, and is confined to a wheelchair. However, once we got to know him, we saw that his challenges are easily overcome by his contagious positive attitude, motivation and open personality.
A Room to Heal volunteers, assisted by the Helping Hands organization from St. James Catholic Church, were able to create Stephen’s dream room and bathroom. The Krome’s home, having been affected by the flooding in 2006 was in dire need of a bathroom for Stephen, which was never completed. A Room to Heal’s team of volunteers were able to create the convenience of a full bath for Stephen’s special needs.
Many local organizations and families contributed time, products, monetary donations and services to create this room for Stephen. The room was painted in a soothing moss green, with matching modern bedspread and lovely painting by Susan Kerr. The oak bed, frame and mattress set were generously donated by Ellis Brothers, along with amazing contributions by the Visram Family, Lowes, Olums and Raymour & Flanigan. The local family of Paul Huff from Huff Ice Cream helped round out the “sports theme” room with a Peyton Manning Fathead that came to life in the room.
Stephen lit up when he finally got to view the special room that so many shared in his love to create. He gave a heartwarming testament to the local news team and surprised his mom with his graciousness and eloquence. We wish Stephen all the best in health, happiness and his completion of his education at Johnson City High School and as he ventures out to live his dreams.
In May 2007, 13-year-old Leon was diagnosed with cancer affecting his intestines and kidney. After numerous surgeries, the last, just before Christmas to reverse a colostomy, Leon is well on the road to recovery. We first met Leon just before Thanksgiving and were immediately drawn to his positive attitude and sharp wit. He shared a bedroom with younger brother Donnie, but it was clear he needed a bedroom of his own. After meeting with Leon and his family, we agreed upon a very aggressive project to create a new room for Leon.
An army of volunteers invaded Leon's home and in 17 short days we raised the roof and built a second floor bedroom for Leon. The volunteers included Room to Heal board members, local builders,artists, family and friends. As much as the room was a gift to Leon, the privilege of spending time with the Koster family was a greater gift to the volunteers. Leon's Room reveal was just before Christmas and several days after he returned home from the hospital. Painted in his favorite color, sky blue, his room was fully appointed with new furniture and all the essentials such as an X-box and flat panel TV, a Susan Kerr original adorning the wall and a Jon Ed Bon Fed caricature of Leon and "Snowflake", Leon's trusty companion. A spectacular room for a very special boy. The room was generously sponsored and funded by the Community Service Fund at BAE Systems in Westover.
Ayana is a 7-year-old little girl who lives in Syracuse, NY with her mother, her 12-year-old brother and 5-year-old sister. At 4, Ayana was diagnosed with Xeroderma Pigmentosa, a genetic disease with such extraordinary sensitivity to sunlight that ordinary sun exposure results in the development of skin carcinoma as a very early age. Children with “XP” are sometimes termed “children of the night” as they can only play outdoors safely after nightfall. Ayana’s family situation is what many of us would term as “unacceptable, ” so needs were identified very easily. Volunteers from A Room to Heal and friends were able to secure “special” funding, donations and volunteers from the Syracuse area to create a wonderful new bedroom for Ayana and her sister. The room was decorated with a Disney Princess theme and needed new paint, new lighting, new carpeting, two twin beds, mattresses, dresser and night stands. A new DVD player was donated, especially for Ayana since she often cannot attend school because of severe Asthma attacks.
Four year old Logan from Owego, NY was diagnosed with a Germ Cell Tumor in May of 2007. After a very intense summer of chemotherapy treatments and a surgery, he is in remission. Logan is a wonderful little boy, very caring and very funny. His smile lights up a room. He has begun Pre-K and has made some new best friends. We are all thankful for how well he is doing.
In October 2007, Logan loves motorcycles and got an amazing new room. Volunteers and friends came to work on his room, as well as a crew from the local company Lockheed Martin.
In July 2007, A Room to Heal was approached by a CompassionNet Case Manager in the Utica area. She was working with a 12 year old boy who was diagnosed with Rhabdomyosarcoma and was dying. Aviano's mother had shared that they were in the process of redoing his room before he became sick and now there just isn't time to work on it because the attention is needed with his illness. He was not even living in his room at the time.
Board members of A Room to Heal felt compelled to help. Our president solicited special funds from family and friends to raise enough to give Aviano what he wanted.
Volunteers spent a Saturday priming, painting and setting up a new room for Aviano. Unfortunately he was unable to enjoy the room as much he would have liked, but the experience brought him much joy and made him feel very special during his last days with his family.
In December 2006, 7 -year-old Macey King was diagnosed with Ewings Sarcoma cancer. She was treated in Syracuse at The Center for Childhood Cancer and Blood Disorders at Upstate Medical University Hospital. Macey lives in Vestal with her parents and four brothers.
Macey was not able to attend 2nd grade and spent a lot of time at home, often very sick and in pain.
Because Macey and her family spend a lot of time together, the family room was selected as the healing environment. Volunteers with A Room to Heal, Inc. were thrilled and moved by what they were able to create for the King Family. At the end of May 2007, Macey's got to see her new room, equipped with a foosball table, big screen TV and a stage. Macey broke out in song singing "The sun will come out tomorrow". There was not a dry eye in the house.
Thankfully Macey’s body responded well to treatment, and in September 2007, she was given a clean bill of health after a series of follow-up tests. Macey is now back in school and doing well.
Luke Zuber is a 13 year old middle school student in Maine, New York. He was diagnosed with a brain tumor when he was three and underwent successful treatment at Boston’s Children’s Hospital. The tumor was gone… until this past year.
At the time we met Luke, he was once again going through treatment and was losing some mobility in his leg and arm. He was very brave.
In Luke's home, we created a recreational room as a healing environment for he and his brother. The room was made from scratch in a section of the garage -- dry wall, ceiling, & carpeting were installed. It was equipped with a game table, TV, game chairs and an XBox 360. One of Luke's favorite touches was the caricatures of he and his brother, done by our very own local talent Jon Ed Bon Fed.
This project was generously sponsored & funded by a local company, Professional Home Care.
In September 2006, Laurie and Linda, co-founders of A Room to Heal, Inc. (ARtH) were approached by a case worker from CompassionNet, a branch of Excellus. Linda knew Amelia because she was also the case manager for her son Eric, when he was going through his bone marrow transplant a year earlier. Amelia was very supportive of A Room to Heal, Inc. and felt that one of her clients would really benefit from the organization. The only concern was that he did not live in Broome County and he was 20 years old, both issues outside of the “guidelines” of A Room to Heal, Inc.
Jeremy was diagnosed with Hodgkins Lymphoma when he was 19 years old. He had two bone marrow transplants in Rochester and unfortunately, both were unsuccessful. Doctors fell that there are no more treatment options for him.
After careful consideration from the ARtH board and the fact that Excellus would be donating $3,000 for the completion of the room, the project was accepted. With Amelia’s advisement and request from the family, only two members of our organization went to work on the room. However, family and friends of Jeremy’s family all pitched in over one weekend, not only working on Jeremy’s room, but also cleaning and re-creating a comfortable environment throughout the entire Hadley home.
Over the course of a weekend, Jeremy’s room was transformed into a bedroom suite. It was cleaned from top to bottom. The walls were painted, carpeting put in, a new king-sized bed for Jeremy’s comfort, a sofa and comfortable chairs for visitors, serene lighting, a TV and DVD system… we even framed the sports car posters he so much loved. In addition, Jeremy’s bathroom got a total makeover by Amelia and other volunteers.
(see notes from Jeremy and his family in the TESTIMONIALS section of this site)
Jeremy was so grateful for his room and from that day forward moved back home. Sadly, we lost Jeremy in March of 2007. In his obituary, is stated, “Those wishing to remember Jeremy may do so with donations to A Room to Heal, Inc.” God bless this wonderful man.
In early July 2006, we met the most wonderful family, who had the most “delicious” little girl: Lexi. Her room was our next project for A Room to Heal, Inc. Lexi is 9-years-old and lives in Endicott with her mother Nikki and her 12-year-old brother Anthony. She loves Aaron Carter and wants a beauty parlor room!
Lexi has been in treatment since she’s been 3 months old. Her brain stopped forming at 6 months of pregnancy. They think she may have been exposed to chicken pox in utero which may have caused brain and nerve damage. When she was born, she had shakes and seizures. She has a very low immune system and is therefore home-schooled (she can't be in a close classroom with other children). Mom says the doctors think it is Ataxia Telangiectasia. Lexi still wears diapers and drinks formula (can’t drink milk), although her favorite foods are homemade macaroni & cheese, garlic and onions. She has a low IQ and qualifies for Alternative Assessment (only 2 % of kids qualify for this). A special education teacher can now modify every teaching for her. Lexi's prognosis is not good and may end up in a wheel chair as her motor skills deteriorate. She takes three medicines (pills and liquid), three times a day. She receives occupational and physical therapies. She has mild cerebral palsy.
Two of our board members, Anne and Lynn stepped up and became project coordinators for Lexi’s room. Volunteers took measurements in the room, talked to Lexi and her family and began soliciting donations from local businesses.
A reporter from FOX 40, Racquel Asa wanted to do the room project story, from start to finish. Racquel fell in love with Lexi as much as the rest of us.
What transformed was amazing! Volunteers worked tirelessly creating a beauty parlor room for Lexi, with all of her favorite things. Beautiful drapes covered the closet, a cool girlie border lined the top of the walls which were painted a soothing warm pink, a soothing ceiling fan helped to circulate air in her room. Her new room also included, white wood furniture, a vanity table and bench, lots of beauty products including a mannequin head for Lexi to practice on, and extremely artistic wall murals done by a local volunteer. In addition, a hand railing was put onto the stairway railing leading up to Lexi’s room and an air filter system was put into Lexi’s room, all to help with her ongoing health issues.
Lexi enjoyed some special trips during the week her room was being done. Her mother and brother, along with her nurse joined Jennifer O’Brien from the Magic Paintbrush Project and while they created beautiful works of art, they got some cherished family time and art therapy. Later in the week, more volunteers took Lexi and her friend for the day to an amazing children’s salon, Kadoozies: they got their nails and hair done, had a party, and went shopping at Target to buy a new outfit! Jon Bon Fed, the famous local caricaturist came to Lexi’s home, visited, made everyone laugh, and drew caricatures of Lexi and her brother.
Lexi had so much fun cutting the “Do Not Enter” tape as she opened the door to her new room. She was so happy, jumping around, laying on her new bed with comfy new linens, and walking around just inspecting everything. She immediately started opening the beauty product gift baskets and started to apply make-up to one of the mannequin heads. Lexi and her family were so thankful for everything and a very special relationship was formed during this project.
Our first bedroom project was at the home of Austin, age 8 who was undergoing treatment for Leukemia, and his younger brother Joey, age 5 who suffers from seizures due to an inoperable mass on his brain. Many of us had the opportunity to participate in the first project, focusing on creating a healing environment for Austin and Joey, who share a room at their home in Conklin, NY.
Volunteers with A Room to Heal spent 5 days working diligently to get the room ready for the boys. The boys were beyond thrilled as they entered their new room one Saturday afternoon, after much anticipation. Austin and Joey gleamed as their eyes traveled across their “healing” bedroom filled with their favorite things! Calming walls the color of a crisp blue sky covered the room & wall murals of fighter jets about to land on their new “runway” desks created much excitement.
To match, the new ceiling fan was a moving jet flying over their heads, and their new, comfortable bedding was as soft as ever! The brothers will be able to spend time in their room, on those bad days, and feel like they are in a special place. They’ll be able to make paper airplanes, listen to the sounds of nature, read stories and watch movies on their brand new TV. They’ll be able to block out the sun when they aren’t feeling so good by using the shading and window treatments they did not have before. The new carpet will provide a soft, cushy feeling under their little boy toes.
Hopefully, you have begun to imagine how special this was for us as the givers. There is nothing like the feeling of helping someone else. There is nothing like the excited expression on a child’s face, or, for that matter, the feeling of gratitude when looking at the tears in their parents’ eyes. It was a remarkable experience and we are thrilled that you will be taking this “ride” with us.
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