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When William entered the world, we could not have envisioned the odyssey ahead of us. William was a healthy, breathtakingly beautiful newborn, with perfect health. He began to meet his milestones in his first year of life. However, William did not begin to walk independently around 12 months, nor at 15 months, nor at 17 months. At 22 months, an MRI revealed abnormal myelin and an undeveloped part of his cerebellum. Thus, began the journey to determine a diagnosis.
The journey lasted for 11 ½ years until whole exome genetic testing revealed a rare genetic mutation in the TUBB4A gene. Unfortunately, little is known about this disorder and the first medical publication appeared recently in May 2013. Although William was a functional toddler, he gradually lost his ability to sit independently, crawl, or use his fingers and hands. He developed severe Dystonia which causes him to be unable to keep his head straight and level. William also lost his ability to speak. He is now in a wheel chair and requires assistance for all of his care.
Despite these challenges, William always has a smile on his face and a happy disposition. His smile literally lights up the room and is contagious. His courage, positive outlook, and playful sense of humor inspire those who are with him. Unfortunately, being a disabled child is a very isolating experience. Outside of school, William does not have an active social life and much of his daily life involves adults rather than kids his age.
William has always loved animals and he has wanted a dog for many years. He loves to pet the dogs in the neighborhood and was thrilled when he visited a dog breeder with a new litter of puppies. As we strive to make his dream a reality, he smiles from ear to ear whenever we talk about having a service dog. We know that having a service dog is going to change William’s life. William and his family cannot begin to express their gratitude for your financial support.
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