In 2009, Fragile Kids Foundation aided more than 430 families with equipment grants. Here is a snapshot of some of the awesome kids, many raised by single mothers and grandmothers, that we were privileged to help:
Amanda, age 20
Amanda has Cerebral Palsy and other disabilities and is being raised by her grandmother. They were in need of a “turney seat”, a specialized van seat that allows Amanda safe entrance and five point support while traveling in a van. The seat is installed with an electronic lift that can be used with her heavy wheelchair.
Rachel, age 20
Rachel has Spina Bifida and is cared for by her single mother. Rachel’s mother requested a manual wheelchair, which is a back up for her power wheelchair that has had numerous malfunctions and repair problems. She has outgrown that chair as week, but is not eligible for a replacement power chair through Medicaid, so the family turned to our organization for a lower cost alternative. Rachel does have some upper body muscle control and can use the wheelchair independently.
Kendrick, age 17
Kendrick has Spina Bifida and is cared for by his single mother. She requested an electronic lift and “turney seat” for their used van to safely transport him. He is very large and his mother has taken a fall in the past attempting to lift him in the van herself and position him in the existing seat.
David, age 16
David has hemiparesis (weakness on one side of the body) and subdural empyema, or fluid and secretion build up in bone and facial tissue resulting in brain damage. His single mother requested several bathroom modifications to allow her to safely enter the room with his wheelchair and take care of his toileting and hygiene needs safely and with dignity.
Jaylah, age 9
Jaylah has Cerebral Palsy and other developmental disorders. She is cared for by her single mother. Her mother requested aid for a stair lift for their home, since Jaylah’s size now does not allow her mother to lift her and carry her up the flight of steps to the bedrooms and bathtub in the house. Her mother has fallen and injured both Jaylah and herself in attempting to transport the child up the stairs without a stable lift system.
Crystal, age 4
Crystal has Angelman Syndrome. She is cared for by her single mother. Typical features of Angelman syndrome are a small head (microcephaly), epilepsy, severe learning difficulties (with poor communication skills and little or absent speech), an unsteady or ataxic gait, characteristic facial appearance and a happy disposition. Her mother asked for a specialized car seat that Crystal’s therapist thought crucial for her safe travel by auto, yet was not covered by insurance programs.
Skylee, age 2
Skylee has Cerebral Palsy and seizure disorder and is cared for by her single mother whose annual income is less than $15,000. They were in need of a “pixie stroller” to accommodate her small size before the need for a wheelchair, while providing supports and straps to keep the child safe during transport.
Blake, age 18
Blake has Duchene Muscular Dystrophy and his cared for by his single mother. She came to us after taking numerous falls attempting to lift Blake into their van. A large boy, the muscle atrophy in his legs has become more severe in the past year, as is typical of this form of Muscular Dystrophy. He can no longer participate in reaching out of his wheelchair and into the van. His mother requested an electronic lift for the van, after securing a portion of the funds from her local church.
Ricardo, age 16
Ricardo has Cerebral Palsy and has vision challenges. His parents requested “EZ locks” for their van so that Ricardo could travel safely by auto in his wheelchair. This device locks down power wheelchairs and when used with a five point restraining strap on the chair, removes the need for a large and costly specialized teen car seat.
Evan, age 10
Evan has Cerebral Palsy and other developmental delays and seizure disorder. He is cared for by his single mother. She has been having difficulty now that he is older getting his wheelchair up the two front steps of their home and requested a ramp to safely transport him into the house.
Julius, age 1
Julius suffers from holoprosencephaly, a condition resulting in a single-lobed brain structure and severe skull and facial defects. In most cases of holoprosencephaly, the malformations are so severe that babies die before birth. Julius has numerous other birth defects and global delays, as well as blindness and seizures. His family requested a “kaye corner chair” at the recommendation of their physical therapist. This will allow them to feed him and administer medications, as well as work on upper body strength, safely. They have agreed to donate the chair to our Loaned Equipment program when Julius has outgrown it in a few years.
Blessen, age 2
Blessen suffers with Periventricular Leukomalacia. This condition (PVL) is characterized by the death of the white matter of the brain due to softening of the brain tissue. Children with this condition have motor disorders, delayed mental development, coordination problems, and vision and hearing impairments. Blessen is cared for by her single mother. They requested a “kaye bench” to safely position her until she is fitted for a wheelchair.