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Kingston

Kingston

Kingston

Every milestone children reach is a significant event in their life, as well as in the lives of their parents. The first smile, the first word and the first step are just a few of those celebrated. As Kingston neared the age of reaching these milestones, his mother and father waited. “We waited on Kingston to walk,” says Kingston’s mother, Amanda. “We didn’t know that he wouldn’t. We thought he was just late. I had even bought him a baby’s first step stamp for his footprint for when the day came. The day never came and he outgrew the memory milestone.”

At 6 months, Kingston stopped growing. After an illness and hospitalization, Kingston began losing the milestones he’s already accomplished, like weight bearing on his legs and pulling up on furniture. Looking for answers, Amanda brought her son to Shriners Hospitals for Children — Greenville. A diagnosis was elusive, until genetic testing confirmed Kingston had spinal muscular atrophy (SMA). SMA is a genetic disease that attacks nerve cells, also known as motor neurons, in the spinal cord. The motor neurons communicate with voluntary muscles, such as those in the arms and legs, and allow these body parts to have control. Lower motor neurons in the spinal cord deteriorate and eventually stop functioning. SMA can affect a child’s ability to walk, crawl, breathe, swallow and control both their head and neck.

While there currently is no cure for spinal muscular atrophy, Shriners Hospitals for Children focuses treatment on managing any pain and improving the child’s quality of life. With SMA, once degeneration begins you do not see any more milestones or strength development. “When we came to Shriners Hospitals for Children — Greenville, we told the doctors we wanted to see our son walk,” says Amanda. “They looked at us and said, ‘It does not matter the diagnosis or disease, here at the Greenville Shriners Hospital we will not take no for an answer. We will work our hardest to get your child to walk.’ Their determination to help our son gave me hope.”

After a year and a half of intense physical therapy twice a week, that day finally came. Amanda describes, “We had almost given up on the thought of seeing Kingston reach his walking milestone. Then one day, with a huge smile across his face, my little man came rolling out of physical therapy at the Greenville Shriners Hospital in his kid walker. Although he was in a support system and not walking independently, I was ecstatic! So you can imagine how I felt when he came out in a manual walker doing it all himself. The smile on his face was worth a million smiles.”

At nearly 4 years old, Kingston is now working with his physical therapist on walking using only crutches for support. “We’re so proud of him and feel that the care he gets at Shriners Hospitals for Children — Greenville is among the best in the world. We are so thankful for them. His disease says walking with crutches is impossible, but the Greenville Shriners Hospital says they will not give up or give in…and they don’t.” Kingston can now walk 125 feet! Amanda says, “People think it’s crazy that we’re willing to drive four hours’ round trip for just one hour of therapy twice each week. I laugh at the thought of not driving to the Greenville Shriners Hospital. We’re one of the lucky ones to have this chance. It’s a chance in a lifetime. We feel as if we’ve won the lottery. The physical therapists at Shriners Hospitals for Children — Greenville are giving us hope and milestones.”

Watch Kingston’s story here.

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