Community, WSU students rally to find an answer for Frankie
By Bill McKee, Moscow-Pullman Daily News, Moscow, Idaho | |
McClatchy-Tribune Information Services |
At 19 months, the
But he's quiet and seems to have issues with sensory processing, and neither his parents or his doctors know why.
"When he was 4 months, we were at a standard checkup when the doctor mentioned he had hyper rigidity -- his muscles were highly tense and toned," said his mother,
That, combined with the fact that he still wasn't rolling over or grabbing for things, led doctors to believe he had some kind of developmental disorder. An MRI showed a delay in myelination, the insulation around the nerves that allows for more fluid movement, and brachycephaly, premature fusing of bones in his head.
They began physical therapy.
"So we started to really worry. He wasn't progressing, he wasn't crawling, he didn't roll over for about 10 months. But he seemed smart though," she said.
After consulting a neurologist, they decided the next step was genetic testing, which allowed them to eliminate many major, and worrisome, syndromes.
"We were able to rule out a number of the really bad things that we were worried about, but there was nothing conclusive," said Frankie's father,
Over the months, working with multiple kinds of therapy, Frankie made some great progress, but he still doesn't say anything and they have no idea what his condition is. They've drained their savings, and are in constant battle with their insurance over what it covers.
On Saturday,
The event is part of the fifth annual Cougar Vision Outreach Program, this year called Finding Frankie's Diagnosis, in which the student-run television station helped to raise funds for a local family with a child who has a development disability.
"We work with Boost Collaborative, formerly the Early Learning Services, here in
Gibbs, who's helped out with the program for the past three years, said the Scotts' case is unique.
"In other cases the family has known what is wrong, and knows what to expect in the future. This case is special, because they don't know what's wrong, and they don't really know what to expect as he gets older," she said.
The Scotts, who have two other healthy children, admit it's been a challenge, and said the most difficult part is not knowing what's wrong. The high cost of treatment and lack of help from insurance means they will likely have to choose between continuing with Frankie's therapy and genetic testing, but they said they're thankful they live in a community that has programs available to help.
"We're really just hoping we can get him caught up before he starts kindergarten," Jonathon said. "We're trying to figure out how to proceed without negatively impacting his future. We don't want to put any label on him."
Anyone who wishes to donate, can reach Gibbs through email at [email protected].
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