Challenge: Thirteen month old Trista has been quite the trooper through a rough first year of life. Born at 37 weeks gestation she was diagnosed with four heart defects, bilateral hearing loss, severe reflux, and consistent low weight gain. Due to the heart defects, she underwent open heart surgery at just 12 days old and four pounds!
Request: In addition to speech and occupational therapy needs ($2400/year), Trista has been enrolled three days per week in St. Rita’s LOFT program for deaf/hard of hearing children. The cost for this program is $432 per month.
Challenge: Nine year old Rhett started showing signs of Apraxia of Speech at the age of 18 months. There are no other significant medical issues but he lost the words he had acquired by the age of 12 months. He is physically healthy but is unable to verbally communicate with those around him.
Request: Rhett gets frustrated when trying to convey his thoughts and needs. He has a lot of receptive vocabulary understanding and communication intent but cannot verbally express himself. Therefore, his request is for a communication device that will allow him to interact with others in a clear and efficient way. ($8600)
Challenge: Two year old Toby has complicated medical history with many diagnoses including failure to thrive, mitochondrial disorder, growth hormone deficiency, seizures, reflux, reactive airway disease, and developmental delays. He is dependent on GJ tube feeds and a central line for nutrition. In addition he has poor muscle tone and balance issues which leads to a lot of falls. He sees many specialists and has been hospitalized many times. His disease is a progressive one and they do not know how quickly it may progress.
Request: As many of these diagnoses have been discovered over the past two years, Toby’s family has found themselves in need of several items for his care. This request includes a special pediatric bed with a head lift to help him breathe ($7500), and a special needs stroller ($650). Eventually, a reliable car that can transport Toby and his equipment will also be needed.
Challenge: Nine year old Clara has a diagnosis of Sanfilippo Syndrome, a rare genetic disorder characterized by mental deterioration, physical decline, and behavioral problems. Symptoms of the disease worsen dramatically as children age and the progression typically causes severe sleep disturbances and restless, active behavior especially during normal sleeping hours.
Request: Clara is able to walk with the assistance of an adult as she can be impulsive and unstable resulting in frequent falls. Sleeping patterns and safety while sleeping have become primary concerns for her and her family. The Sleep Safe Full Size bed has been recommended for her in order to accommodate both her growing body and her progressing disease. ($10,000)
Challenge: At nearly 6 years old, Leah is beating the odds of Spinal Muscle Atrophy I (SMA I). She presents with flaccid tone in the trunk of her body and all her extremities. Her disabilities secondary to her diagnosis are severe. She requires adaptive equipment for functional positioning. She is at risk of injury due to lack of support and poor positioning. Therefore, she must be transported in a highly customized wheelchair which is extremely heavy.
Request: Lifting Leah in and out of her wheelchair and a vehicle increases her risk of injury, especially as she grows heavier. In addition, her wheelchair is too heavy to be lifted into a van without adaptations and it cannot be broken down small enough to be put into a car. The request is for their current vehicle to be adapted to the needs of Leah and her wheelchair. ($6200)
Challenge: Five and a half year old Isaac was born with several special needs including Down Syndrome, a defect in his heart, a near-sighted stigma in his eyes, and unilateral hearing loss. Despite all these challenges, he is very smart and active.
Request: Isaac’s family has worked hard to provide creative and therapeutic equipment for his play and growth with a playset, huge sandbox, trampoline, etc. However, as he grows and becomes more curious, he tends to quickly wander out of the yard and has no fear for his safety. His parents are asking for assistance with a fence for his back yard to keep him safe in his therapeutic setting. ($2750)
Challenge: Six year old Abigail began having seizures at the age of 3 months. Following a MRI and 24 hour EEG, it was discovered that she had a moderate to sever abnormality on the left side of her brain. She is also missing her corpus callosum, the structure within the brain that connects the two hemispheres. Additionally, she was diagnosed with a rare seizure disorder called Infantile Spasms. It took 2 and a half years before they found a medication to control her seizures. This left her profoundly delayed. She cannot yet walk or talk.
Request: Abigail’s seizure disorder has significantly impaired her cognitive abilities thus making it unsafe for her to sleep in a traditional bed. She is at risk for injury from falls or entrapment during a seizure and a high sided bed would prevent this injury. Her parents do not think it is necessary to have all the electric components to the bed so they have an Amish carpenter willing to build Abigail a safe bed, according to their specifications, for $1,845.
Challenge: Ten year old McKenna has moderate to severe bilateral hearing loss in both ears. She currently wears hearing aids in both ears.
Request: Her request is for an FM hearing system to use at school in conjunction with her hearing aids. This recommendation comes from both her audiologist and her general practitioner. The cost for this system is $3628.
Challenge: Mason is an eleven year old boy challenged with Spastic Diplegia Cerebral Palsy since birth. He has gone through several rounds of intense therapy and has done very well it. However, just two years ago, Mason began having knee pain and ended up having to spend some of his time in a wheelchair. An outstanding doctor in New Jersey diagnosed him with a condition called VARUS (torking/spinning of the leg muscles as he walks) and said it would only get worse. So Mason underwent the recommended surgery.
Request: Mason has done extremely well with his recovery and building his muscles back up so that he can walk. One of the ways he has done this is by riding his adaptive bike. The bike provides excellent therapy and increases leg strength. However, Mason has outgrown his current bike and needs a larger one. Another BB4K family has donated a used adaptive bike worth at least $500 and would love to see Mason receive it.
Challenge: Four year old Camden was diagnosed with Cerebral Palsy and epilepsy when he was 4 months old after noting his lack of development and having the doctors run a variety of tests. Last summer Camden went through Intensive Therasuit Therapy and he has been walking independently since then. He needs a wheelchair for long distances, but in daily living he walks independently.
Request: While Camden receives weekly physical, occupational, speech, and water therapy, he needs the Intensive Suit Therapy in order to help him with walking, standing, spasticity, and concentration. Since he attended this therapy last summer and experienced such huge improvements, his family would like to do two more sessions, one before and one after his upcoming surgery. ($5425)
Challenge: Three and a half year old Tanner was diagnosed at the age of 20 months with mixed Receptive/Expressive Language Disorder and has been receiving speech therapy once a week at Cincinnati Children’s Hospital ever since. After several months of speech therapy, his speech therapist recommended an occupational therapy evaluation. That evaluation revealed that Tanner was also dealing with Sensory Integration Disorder.
Request: As Tanner was not progressing well with his speech therapy, it was decided that he should try an additional type of speech therapy called PROMPT therapy. His PROMPT therapist along with his speech therapist from CCHMC diagnosed Tanner with Severe Verbal Apraxia. The PROMPT therapist is the only one in the tri-state area and she is out-of-network on the family’s health insurance. The request is for assistance with the cost of PROMPT therapy ($5425)
Challenge: Four and a half year old Quennedy began showing speech and social regressions at 14 – 15 months of age and eventually became non-verbal altogether. In April of 2009 he was diagnosed with Autism. He is a participant in the early intervention program at CCHMC’s Kelly O’Leary Center for Autism. Quennedy attends this program throughout the school year on the Ohio Department of Education Autism Scholarship. However, in order to prevent regression in his acquired skills throughout the year, it has been recommended that he participate in extended school year services.
Request: Extended year services will focus on the prevention of academic and linguistic skill regressions as well as additional skill acquisition. In addition, it has also been recommended that Quennedy participate in weekly social skills sessions to maintain his acquired socialization with peers and continued reduced levels of behavioral disruption. ($2700)
Challenge: Five year old Owen has challenges with sensory processing, fine motor skills, visual perception, and bilateral coordination skills. He has participated in the Sensory Learning Program in the past at which time his progress included an interest in letters, numbers, and colors as well as making leaps and bounds with regards to his speech. Recently, it was discovered that Owen has significant vision impairment and he Majnow wearing glasses to address the issue.
Request: It has been suggested by Owen’s current therapists that he repeat the Sensory Learning Program now that he is wearing corrective glasses as it will affect the approach and process. The request is for the SLP Therapy as well as his ongoing Occupational Therapy. ($5425)
Challenge: Ten and a half year old Majestic has a diagnosis of Cerebral Palsy causing him to have increased muscle tone with decreased range of motion in all extremities, difficulty with weight bearing and maintaining a standing position, decreased core and extremity strength. He has shown great progress through intensive suit therapy and continues to do those sessions two to three times per year.
Request: Majestic is currently going through growth spurts which causes his muscles to become tighter on a regular basis as well as decrease his endurance and ability with tasks. It is difficult for him to maintain gains that he has reached in therapy. Therefore, his therapist has recommended a home fitness program with a personal trainer during his break from intense therapy. The cost is $1300 for 20 sessions.
Challenge: Taylor loves to do crafts and to cook. She hopes to become a chef one day. At the young age of 13, she has dealt with more health problems than most of us could even imagine and she has lived in the Ronald McDonald House with her mother since July 2007 because of those issues. At age 7 it was discovered that her entire digestive system was shutting down. By the age of 10, she received a multi-visceral transplant (small bowel, pancreas, liver, and colon). While these new organs have done well, she had to get a pacemaker for her heart and her kidneys shut down. She receives multiple therapies, has many medical appointments and has to undergo dialysis as she awaits a new kidney.
Request: Taylor hopes to receive a kidney and go home soon but while she waits, she whips around the hospital in her power wheelchair with a smile on her face. Doctors anticipate that she will return home to Canal Winchester, Ohio but will need to travel to and from Cincinnati for continued medical appointments for a long time. Taylor’s mom is a single mom who has not been able to work since they moved to the Ronald McDonald House in Cincinnati. She currently has only a small compact car and once released, will not be able to transport Taylor. A van and lift is needed in order for her safe transport. ($7500)
Challenge: Two year old Malei has a long list of diagnoses which include Cri-Du-Chat Syndrome, epilepsy, low muscle tone, muscle weakness, balance problems, and more. She has many doctor appointments and therapy visits each month.
Request: Malei’s mom drove her car as long as it would hold up. She now has no transportation to get Malei to her many appointments and, as a single mom, struggles to meet Malei’s many needs. They need a reliable vehicle, preferably a 4 door truck or mid-sized car so that she can take Malei’s wheelchair when they venture out.
In addition, her speech and language therapists have recommended several cause and effect type toys and books for her.
Challenge: Zoey was born at 29 weeks gestation with a rare chromosomal defect, Tetrasomy X, which affects only females. Born 3 months early, she only weighed 3 lbs., 8 oz. At 3 years of age, she is still learning to sit up, her legs & feet turn out, she has poor muscle tone (especially head control), and she can do some belly crawling.
Request: Zoey is an excellent candidate for Conductive Education and has, in fact, attended the Conductive Learning Center of Greater Cincinnati recently. This program allows for more intensive therapy on a weekly basis. Her family would like to see her improve upper body strength and head control as well as learn to sit on her own. Stretch goals with enough therapy are that she will learn to crawl and walk. The cost is $710 for May (3 days/week) and $1200 for June (5 days/week).