After years of trying to figure out what was wrong with their four-year-old son, Noah, the Gluck family got an answer, but it was one that changed their lives forever. "I remember him coming into our hospital room and saying, 'He has cerebral atrophy, which is fatal,’” Noah’s mom Cassie Gluck said. Noah was just three years old. "We all cried,” Gluck said.
Noah has KIF1A-Related Disorder, a disease you’ve probably never heard of. That’s because there are only about 100 diagnosed cases worldwide. KIF1A-Related Disorder is caused by a mutation in a gene. Doctors discovered the mutation six years ago. Often misdiagnosed as cerebral palsy, KIF1A-Related Disorder is causing Noah’s brain to deteriorate. It will eventually take his life. “I don't know how long he has to live,” Gluck said. “I've seen cases worse than him and I've seen cases that are much better than him, but I'm just going to take each day as it is."
Symptoms of the disease vary. Noah's include autism, learning disabilities, low muscle tone and eye problems. Those will get worse as time goes on. Right now, the only option is to treat the symptoms, not the disease. "He likes splashing in the water, he likes playing with his brother, he likes crawling through things and he loves food," Gluck said. But Gluck sees time taking her little boy’s strength away. "Just this past year, he's kind of gone downhill,” Gluck said. Noah had his fifth surgery in October to help with spastic paraplegia, which is another symptom of KIF1A that causes tightness in his legs. "My goal is to keep him moving,” said Dr. Matthew Dobbs, a Washington University orthopedic surgeon at St. Louis Children’s Hospital. “We want mobile Noah."
"Riding is Noah's favorite therapy activity," shares Gluck. "Hippotherapy at Ride On St. Louis has been the most effective therapy for Noah. Every time he rides we notice his core strength improves and he starts saying words he usually forgets how to say. Even though his diagnosis is terminal... riding gives him joy and us hope."
Read the full original story by Rachel Droze at News Channel 20
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