He was diagnosed with Mosaic Trisomy 22 at birth. This defect in chromosome 22 causes heart defects, Musculoskeletal defects, eye defects, delayed learning abilities, as well as neuropathy.
Charles has also been diagnosed with Charcot-Marie-Tooth disease (CMT). The neuropathy of CMT affects both motor and sensory nerves. (Motor nerves cause muscles to contract and control voluntary muscle activity such as speaking, walking, breathing, and swallowing.) A typical feature includes weakness of the foot and lower leg muscles, which may result in foot drop and a high-stepped gait with frequent tripping or falls. Foot deformities, such as high arches and hammertoes (a condition in which the middle joint of a toe bends upwards) are also characteristic due to weakness of the small muscles in the feet. In addition, the lower legs may take on an "inverted champagne bottle" appearance due to the loss of muscle bulk. Later in the disease, weakness and muscle atrophy may occur in the hands, resulting in difficulty with carrying out fine motor skills (the coordination of small movements usually in the fingers, hands, wrists, feet, and tongue).
Onset of symptoms is most often in adolescence or early adulthood, but some individuals develop symptoms in mid-adulthood. The severity of symptoms varies greatly among individuals and even among family members with the disease. Progression of symptoms is gradual. Pain can range from mild to severe, and some people may need to rely on foot or leg braces or other orthopedic devices to maintain mobility.
Along with his most recent diagnosis of cervical spinal stenosis, he will eventually need surgery and will need this wheelchair for recovery as well as to keep his mobility for life.
He wants to remain independent as much as possible. That is why this wheelchair is so important to him. He has outgrown his current wheelchair. The wheelchair enables him to travel with family to amusement parks, ball games (Morehead City Marlins) Denton Farm Christmas Train, shopping, and excursions where the walking is too long causing severe pain in his feet, legs, and back.
$2000 out of pocket wheelchair
$1800 lumber for ramp
Any donations are much appreciated. God Bless you all.
- Nikki R
- Glenda Speight
- Cara Rodriguez
- dennis smith
Organizer and beneficiary
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