Challenge: At nearly four years of age, Gabriel has been given multiple diagnoses including Mitochondrial Disorder, Seizure Disorder, Tachycardia, Asthma, and several others. He requires frequent hospital stays, weekly therapies, constant monitoring of food intake, and a long list of medications. Due to his Mitochondrial Disorder, he is unable to produce energy and tires quite easily. Doctors have been unable to identify the specific disorder and as of now, his prognosis is unknown. He sleeps anywhere from 15 – 18 hours per day and when becomes ill, has to be hospitalized.
Request Filled: Gabriel received a wheelchair lift for the family vehicle. ($2640)
Challenge: Five year old Yarley is diagnosed with Myotubular Myopathy which is one of a group of diseases that cause problems with the tone and contraction of skeletal muscles. It is characterized by profound loss of muscle tone, weakness of skeletal muscles, respiratory insufficiency, eye muscle weakness and droopy eyelids. He has a trach and is ventilator dependent.
Request: Yarley needs a portable suitcase ramp so that he can be taken in and out of his home for school, doctor appointments and family outings. ($380)
Challenge: Three year old Jesi was born in Haiti and was abandoned due to her special needs. She was found by American missionaries who recognized her severe need and brought her to America on a Medical Visa. After arriving here in the US, the missionaries, who thought she had hydrocephalus and seizures, took her to doctors and found out her needs were much more severe. She was diagnosed with severe brain damage, a stroke which affects her right side, infantile spasms, and Cerebral Palsy. It was too much for the missionaries, but there was no one to send her back to and the doctors would not release her back to her country anyway due to her advanced medical needs. It was then, in March of 2007, that she found a home here with parents who are in the process of adopting her.
Request: Jesi is here on a Medical Visa and is currently not a US citizen. Therefore, she did not qualify for Medicaid, MRDD, or any other programs that assist children and families with different abilities. Once her adoption is finalized, they will still have to wait 2 years until she is officially a US citizen. Jesi smiles and giggles constantly and she needed communication devices so that she could communicate her needs and interact with her family. ($1430)
Challenge: Fifteen year old Taylor has been identified with an educationally and communicatively significant, sensorineural hearing loss in both ears which impairs her ability to hear consonants in everyday speech. Therefore, she misses most of what is being said to her. Her hearing loss is complicated as she hears normally at very low and very high frequencies but not in the middle range. This is called U-shaped Hearing Loss.
Request: Her current form of amplification required the use of an earmold and blocked her hearing in the low frequencies. Her request was for binaural hearing aids. ($2640)
Taylor sent her own note with the application. It read, “I like to read and write and my dream is to become an author. I’ll do whatever it takes to succeed and I don’t want anything getting in my way. With your help, my dream can be true.
Thanks ~ Taylor”
Challenge: Darrin, who has Deuchenne Muscular Dystrophy, is 13 years old and has been unable to walk now for 2 years. His parents are in the process of providing him a handicapped bathroom and although they have gotten some money through the Medicaid Waiver, they have had to do much of the work themselves. Their church group came in and tore out all the old walls and put up the main wall. Darrin’s dad ran all the electrical and added a wall on the window side of the room so that the plumbers could fit the plumbing in the wall.
Under the Medicaid Waiver, they were able to get the plumbing in, the shower done, a door to the bathroom, and tile put in the shower. They also have an ADA toilet and pedestal sink.
Request: After all that, they could not afford to finish the bathroom for Darrin so they asked for help! Darrin’s condition will continue to deteriorate and children with Deuchenne MD usually need total care by the age of 20. This bathroom was very important in insuring that he will be able to, for now, have some independence, and as he grows and weakens, have a place where his caregivers can assist him. ($1100 for remaining materials needed)
Challenge: Seventeen month old Brayden was born with mild hearing loss in both ears. He has recently been tested and has progressed to a moderate to severe loss.
Request: Brayden is at the age where language development is critical. The hearing aids are allowing him to develop appropriately with his peers to ensure that he doesn’t fall behind in development or in school. ($2600)
Challenge: Anna was adopted from Russia by a single mom in October 2009. She had no idea that Anna had any hearing loss at the time, let alone one that is moderate/severe. The cost of the adoption itself has drained her mom’s finances and Anna cannot hear any conversation at all which leaves her essentially unable to communicate.
Request: Anna’s has received the hearing aids she needed and she is attending Ohio Valley Voices School for the Hearing Impaired. The cost for the hearing aids is $3700.
Challenge: Seven and a half year old Kross has dealt with hearing loss since birth. He has moderate to severe sensorineural loss but does well with his hearing aids and wears them every day. However, he struggles with hearing if there is any type of background noise.
Request: His new FM hearing system has improved his life by filtering out the background noise so he can pay better attention in school, at home, and in public. The system cost was $3750.
Challenge: Three and a half year old Kaylen was born with Goldenhar Syndrome and premature lungs. Due to her syndrome, she had major gastrointestinal problems and had 3 skin tags. Two of those were removed in her first year. In addition to many other conditions, she has suffered mixed hearing loss.
Request: It was determined by Kaylen’s audiologist that there was no further medical intervention to correct her hearing loss at this time. Therefore, amplification was recommended to allow access to speech for learning and communication. The FM hearing system cost $3,300.
Challenge: Jack is a 4-year-old with a diagnosis of cerebral palsy and seizure disorder. He deals with multiple physical deficits including abnormal tone which requires intervention with supportive seating. He requires adaptive positioning for all independent postures other than lying on the floor.
Request: Jack has three siblings, two of which are his triplets (a brother and a sister) as well as an older brother. His family likes to interact together on the floor and Jack needed a means to participate with them other than lying on his back on the floor. After trying several seating solutions at his therapeutic program, it was been determined that the Soft-Touch Sitter Mobile Tilt Wedge Kit was the best option for him ($500)
Challenge: Four year old Dakota was only 4 months old when he began rejecting his baby foods. He would only eat 3 at that time. At the age of 1 year, he totally refused solid foods and was first diagnosed with sensory integration disorder. They also found that he has low muscle tone and texture aversion . He currently gets most of his nutrition through Pediasure and he eats less than 10 foods.
Request: His request was for Sensory Integration therapy which will helped him to tolerate more textures and began to teach him to overcome his eating issues. The family has found some funding and BB4K assisted with the remainder. ($ 700)
Challenge: Ten year old Chloe was diagnosed with bilateral hearing loss at birth. She was born full term but only weighed in at 2 lbs. 7 oz. and has been diagnosed with Williams Syndrome. She has had occupational, physical, and speech therapy and has done well but she has yet to pass a hearing test.
Request: Chloe was missing out on a lot of what was going on around her, including instructions from her teacher, affecting her learning and understanding as well as classroom participation. She needed digital/programmable hearing aids for both ears that would be adaptable to the FM hearing system she uses at school. ($3000)
Challenge: One year old Ariel has a diagnosis of a bilateral moderate-to-moderately severe hearing loss. She has been using a pair of loaner hearing aids from Cincinnati Children’s allowing her excellent access to sound. Because of the hearing aids, she has had good language development thus far.
Request: The loaner hearing aids hadto be returned and in order to continue with the success she had been experiencing in language development, she needed to purchase her own hearing aids. Amazingly, most insurance companies do not cover them and her family could not afford them. ($3200)
Challenge: Ten year old, Blake has the diagnosis of Quadriplegic Spastic Cerebral Palsy. He is delayed in all areas ~ he doesn’t walk, talk, or play like other kids. He is in a wheelchair and requires therapy services to improve his motor skills.
Request: Blakes doctor and parents felt that he would benefit from Intensive Therasuit Therapy through Leap Beyond Therapy.enefit him. The cost was $5500 and Leap Beyond gave BB4K a discount. ($4950)
Challenge: Five and a half year old Ryan has been identified with a permanent bilateral conductive hearing loss which puts her at a disadvantage for learning and language development. She has a difficult time understanding speech in the presence of background noise.
Request: Ryan had already made huge improvements with her communication and speech. She had recently received new hearing aids and has been getting speech and sign language therapy. It was then recommended that she obtain a FM Hearing System in order to help her continue to improve. FM System: $3750
Challenge: Five year old William has a complex medical history. He has a chromosomal anomaly (partial deletion of chromosome 4), autism spectrum disorder, and a mitochondrial disorder. Because of these disorders, he has also been diagnosed with verbal apraxia. His speech is highly unintelligible.
Request: The monthly costs of therapy, medication, doctor visits, etc. add up to more than the cost of the mortgage each month. Will’s family was asking for assistance with a special therapy that is not covered by insurance called the PROMPT Technique which has been quite successful for children with apraxia. The cost: $95 per week, 28 weeks of therapy. ($2660)
Challenge: Eight year old Fiona was diagnosed with unilateral hearing loss when she was in kindergarten. She has a 90% loss of hearing in her right ear and no cause has yet been determined. Children with unilateral hearing loss experience great difficulty and fatigue in all settings of their lives. They are statistically more likely to fail in school or experience other educational challenges.
Request: Fiona was not a candidate for traditional amplification as she has very poor discrimination skills in her right ear. The TransEar device is designed especially for patients with single-sided deafness as it utilizes bone conduction to send sound energy via the bones of the skull to be perceived by the good ear. This option did not involve any type of surgical procedure and has assisted her in speech perception, difficult listening environments, and pertinent educational settings. ($3100)
Challenge: Eleven year old Nathaniel was diagnosed with intractable epilepsy at the age of eighteen months. He also has moderate mental retardation and muscle incoordination. These conditions cause weakness in the lower extremities, weakness in his trunk, decreased standing balance and impaired coordination.
Request: Nathaniel is receiving physical therapy as well as software to enable him to better communicate with others. ($1850)
Challenge: Twelve year old Ian was diagnosed with Schizencephaly with quadriplegic cerebral palsy at birth. He cannot talk, walk, or feed himself without assistance. He is extremely bright and on the honor roll.
Request: Ian’s request was for several items that help him in his daily life and with his school work. They are: Rifton Blue Wave Toilet System ($1400), Tumble Form Feeding System chair as he has outgrown his current one ($800), Trackball mouse and special keyboard ($600). Total of $2800.
Challenge: Three 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. He can walk with a walker but has not yet been able to walk independently.
Request: While Camden receives weekly physical, occupational, speech, and water therapy, he also needed the Intensive Suit Therapy in order to help him with walking, standing, spasticity, and concentration. This therapy has moved him much closer to independent walking. ($1953)
Challenge: Eight year old Daniel was born with a cleft lip and palate and met his developmental milestones for motor skills at the age appropriate times. However, initial speech & language development was reported to be delayed. He has had a history of severe and chronic middle ear disease so hearing tests have been conducted.
Request: Daniel has been diagnosed with fluctuating conductive hearing loss as well as Central Auditory Processing Disorder. His audiologist suggested that an FM Hearing System would greatly impact his potential to do well in school and in other large settings. ($2925)
Haleigh and Tori
Challenge: Haleigh, age four and Tori, age three, were adopted in 2008. Both girls were born without a center brain due to fetal alcohol exposure. Both girls are physically handicapped and have global developmental delays. In spite of their condition, the girls have a strong desire to interact and have made many developmental improvements.
Request: The family asked for help with home modifications to meet the needs of the girls. The girls both require walkers to get around and the family lives in a tri-level home. They requested up to $5,000 from BB4K to assist with these modifications. The overall projected cost of the need was $15,000 but the family diligently worked on other funding sources with success. ($5000)
Challenge: Ten year old Elisha is diagnosed with Scoliosis and Arthrogryposis, muscle contractures of her body in the chest, hands, arms, legs, feet, and neck. She has already had surgery on her hands and legs but both are reverting back to the way they were causing doctors to consider more surgery in the future. She wears a torso brace for her scoliosis which has put her spine very far out of line. The scoliosis will cause her to have steel rods put in her once her growth spurts have finished. Right now, it has gotten bad enough that it could start affecting her internal organs.
Request: Elisha’s grandparents care for her 5 days per week and many weekends. They take her to the doctors, hospitals, and therapies. She and her wheelchair are getting to heavy for her grandmother to lift so they are asking for assistance with a van and lift. BB4K has a donated van w/lift that is a perfect fit for this family as it is a bit older and her grandfather can maintain and fix it. The monetary need is for a few fixes and new tires for the van. The van has been delivered! ($1600)
Challenge: Five and a half year old Caden was born 6 weeks prematurely. He was diagnosed with cerebral palsy secondary to periventricular leukomalacia. He has had developmental delays, primarily with his motor skills and has had various therapies since birth. With those therapies, he has shown significant improvement and is walking with some support.
Request: Caden has gone through a couple of sessions of intensive physical therapy and has shown a marked improvement. His doctor suggests that more of this specialized three week therapy would be helpful in his progression towards greater independence, a better quality of life, and improved self esteem. Because this therapy is a 3 week intensive therapy, his request was for assistance with the cost of therapy ($2000) as well as with displacement costs ($1480).
Challenge: Three year old Collette was diagnosed at age one with Muscle Hypotonia and without physical therapy at that time, she would not have been able to walk. Currently, due to the therapy she was able to receive, she is able to walk and slowly run! She is still unable to walk up stairs, is limited in climbing, is still delayed in speech, and has limited strength in her hands. Hypotonia is not a condition that is outgrown but its effects can be minimized or overcome with therapeutic treatment.
Request: Collette needs to continue her occupational, physical, and speech therapy in order to make improvements in fine motor, sensory motor, gross motor, and language/feeding skills. These therapies will make it possible for her to function independently at a developmental level appropriate for her age.
Challenge: Ten year old Leslie and her twin brother, Caleb were adopted at birth. Their parents were provided very little family medical history by the birth mother and there was nothing available from the birth father. Though born 8 weeks early, they both seemed to thrive in their early years. However, by the age of 7, both were exhibiting behavior beyond the scope of normal. For the past three years, the kids have been tested and diagnosed but none of the recommended treatments have shown much promise. Both children are approximately 2 years behind academically compared to typical 10 year old students.
Request: The request is for a Sensory Learning Program ~ a multi-sensory therapy that stimulates the visual, auditory, and vestibular systems, challenging them to work together and better adapt to multi-sensory input. The amount requested was $1625.
Challenge: Ten year old Caleb and his twin sister, Leslie were adopted at birth. Their parents were provided very little family medical history by the birth mother and there was nothing available from the birth father. Though born 8 weeks early, they both seemed to thrive in their early years. However, by the age of 7, both were exhibiting behavior beyond the scope of normal. For the past three years, the kids have been tested and diagnosed but none of the recommended treatments have shown much promise. Both children are approximately 2 years behind academically compared to typical 10 year old students.
Request: The request is for a Sensory Learning Program ~ a multi-sensory therapy that stimulates the visual, auditory, and vestibular systems, challenging them to work together and better adapt to multi-sensory input. The amount requested was $1900.
Challenge: Six year old Charlie has a diagnosis of Down Syndrome with a slight hearing loss in both ears and a speech delay. He also battled leukemia at the very young age of 16 months and is currently in remission.
Request: Charlie was fitted with loaner hearing aids last month and has shown improvement. He can only keep those loaners for a maximum of 90 days. The request is for the purchase of his actual aids. ($3050)
Challenge: Twelve year old Bradley was born 6 weeks premature and spent 26 days in ICU with under developed lungs. Because he had failed hearing screenings, he was tested at the age of 9 months to confirm the hearing loss. At that time he was fitted with hearing aids and began speech therapy but showed no improvement. At the age of 18 months, he received a cochlear implant on his right ear.
Request: Recently, it was determined that he has residual hearing in his left ear and he has been having problems with his cochlear implant equipment leaving him without any sound at times. The audiologist fitted him with a loaner hearing aid and has shown great benefit from that added amplification. His request is for a digital hearing aid for his left ear and an updated processor for his right ear. ($2930).
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 $432 per month.
Challenge: Three and a half year old Evan suffered PVL (brain injury) shortly after birth leaving him with a diagnosis of quadraplegia and infantile cerebral palsy. The damage caused to his brain left him with limited motor control or the ability to develop motor control. At around one year of age, he developed infantile spasms which further impaired development. Thus far, all seizure treatments have been ineffective and Evan remains unable to develop motor skills required for mobility.
Request: Evan’s request is for a wheelchair accessible van to travel safely from home to therapy and other doctor appointments as he needs to be transported in his wheel chair. ($ 8250)
Challenge: Ten year old Vincent has multiple diagnoses which include cerebral palsy, seizures, chronic lung disease, reflux disease and osteopenia. He is on a ventilator, has a feeding tube, and is wheelchair bound. He requires a nurse to care for him at all times.
Request: Vincent’s mom has a van but, as he continues to grow and gain weight, she can no longer lift him in and out of the van safely. His request is for the purchase and installation of a lift and tie downs for their existing vehicle. ($3975)
Challenge: Five year old Chase has spinal muscular atrophy (SMA), type 1. Diagnosed at 7 months of age, Chase cannot sit, stand, or walk due to the lack of voluntary muscle control secondary to SMA. This weakness also affects his breathing and eating, requiring him to have a g-tube and respiratory equipment for daily treatments and life-sustaining needs. Even though Chase cannot sit, stand, walk, or even hold his head up, he is one of the happiest, sweetest little guys you'd ever meet. He is also very intelligent and loves playing on his computer. One of his favorite things to do is to show off his talent of saying the alphabet backwards.
Request: The need is for an elevator or lift in the house to safely get Chase and his equipment up and down the stairs. They are also in need of an adapted van with lowered floor, since Chase's head almost hits the top of the van when getting him in, and as he is getting heavier, it is getting much more difficult to push him up the steep ramp with all of his respiratory equipment. (up to $10,000). An elevator has been donated.