(via Collinsville Family Prays For A Cure For Children’s Rare Disease)
COLLINSVILLE, Oklahoma –
Everyone with children remembers those overnight feedings, and of course, we remember when they ended. But what if they didn’t end?
One parent is up every two or three hours every night for the foreseeable future, that’s what life is like for a Collinsville family. Their two younger children require regular feedings every three hours of every night. Wait until you hear what they are eating.
They are the Marshalls’ kids from Collinsville, sisters Kamilynn, and Brynlee, brothers Beckett and Harrison, ages 7 to 20 months.
You’d never know it, but the boys have a very rare disease called Glycogen Storage Disease. Their livers don’t process sugar properly, so without a regular supplement, the supplement is corn starch.
“This is what we go through in about two days,” Amy Marshall said.
It keeps their blood sugar at a consistent level. The Marshalls buy it by the case at Sam’s Club, a simple sounding answer to a very complex problem.
“They couldn’t just eat more often, the food is not enough, the corn starch is what they need,” Ryan Marshall said.
Not just an occasional supplement, they showed us the schedule. A prescribed amount mixed with cold water, every two or three hours of everyday, conceivably forever.
“They’ve fallen through the cracks of the system,” Ryan said.
Because there are so few cases, only one other in Oklahoma agencies that might provide assistance have to become educated. The Marshalls say the process is endless.
The kids’ immune systems are weaker, so germs are a problem.
“We try to stay out of public places,” Amy said.
Even minor illnesses can result in a hospital stay. Daily routine is onerous enough. Every night, they put together an “overnight basket” pre-measured containers for each boy. They’ve got to check blood sugar ever two hours too.
The Marshalls hope and pray for a cure. Until then, they do all they can to ensure the kids are as healthy and happy as possible.