Trista
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.
Rhett
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)
Toby
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.
Clara
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)
Leah
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)
Isaac
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)
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Abigail
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.
McKenna
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.
Mason
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.
Camden
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)
Tanner
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)
Quennedy
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)
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