This holiday season, a Lakeland family wishes to go to North Carolina.
It is not for a vacation, but instead an intensive, specialized therapy for a toddler with an “ultra rare” genetic disorder.
“If we could help him make those connections from his brain to his muscles, then he’ll continue to progress forward,” said Kayla Newmyer of Lakeland.
Newmyer’s 2-year-old son, Keegan, is a toddler with a sense of humor.
Kayla Newmyer describes Keegan’s condition as living in a “glass bubble.”
Keegan soaks in the world around him, but his body does not allow him to access it.
At 11 months old, Keegan Newmyer was diagnosed with Snyder-Robinson syndrome, an ultra-rare genetic disorder with few cases worldwide.
“He might be the only boy that you ever meet with this condition,” Newmyer said. “With it comes low muscle tone, seizures, kidney issues, a bunch of other things that are pretty common with other genetic disorders.”
Keegan also has Lennox-Gastaut syndrome, a severe form of epilepsy.
“Unfortunately, there are times that [children with Lennox-Gastaut syndrome] don’t wake up from their sleep. The seizures stop their brain. We are always thankful for every morning that he wakes up,” said Newmyer.
Through her research, Newmyer found a facility in North Carolina called “All Kids Are Perfect,” which provides intense, weeks-long therapy aimed at improving his skills and better linking Keegan’s brain to his muscles.
“Traditional PT does work, but it takes a long time, and these intensives kind of speed up the process,” said Newmyer.
The program, plus the cost of a visiting therapist when they get home in Lakeland, would cost $14,000, which the Newmyers are trying to raise.
“If it means that he can gain some independence then the uncomfortable ask of your community to say ‘Hey, could you share this? Get the word out.’ It’s worth it in the long run,” Newmyer said.
To learn more about Keegan’s journey and how to help, visit https://www.supportnow.org/keegans-journey-forward?fbclid=IwY2xjawOmh0dleHRuA2FlbQIxMABicmlkETF0WWwzUjdqQlA0SlNIMmZ0c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHg1CNOwep0kji2W6EP14VaJt119r9h2Y9dox6-PX9eKggosYsICBJgX7pHQD_aem_n912CqpSoUU72XN21R0MHA.