Lowell parents enjoy moments with toddlers battling rare disorder

Kent County

LOWELL, Mich. (WOOD) — A Lowell family is staying positive after both their toddler sons were diagnosed with a rare genetic disorder that can shorten the two boys’ lifespans.

Two-year-old Daxton and 4-year-old Sawyer are as silly and playful as most kids their age, but under the surface, they’re battling something quite serious. The boys were diagnosed with Hunter syndrome or MPS II.

“I didn’t cry at that appointment. I just kind of went numb,” the boys’ mother Cory Blain said.

The disorder impacts just about every function of the body including joints, muscles, speech, hearing and eventually the lungs and heart. It’s also more common in boys.

“The average person like you and I have an enzyme, which is kind of like a garbage truck to take out the trash. Their bodies are missing that garbage truck,” Cory Blain said.

Both boys currently need hearing aids. Daxton has developed hip dysplasia and has trouble speaking. Sawyer has a curved spine, issues with his joints and now trouble forming full sentences.

A Lowell family is staying positive after both their toddler sons were diagnosed with a rare genetic disorder. (Feb. 21, 2021)

“Just knowing in the next two or three years he might not be able to speak at all, he might have to be in a wheelchair — it’s just crazy how fast all of that is happening and we didn’t know all of that was happening just one year ago,” said Jason Blain, the boys’ father.

“Having the dream of one day coaching their little league teams and all the dreams that normal families would have to overnight, the devastation of realizing none of that is going to happen anymore,” Jason Blain continued.

MPS II currently has no cure, meaning the boys are also expected to have a much shorter life span of 10 to 20 years.

“I honestly try not to think too far into the future and just live every day,” Cory Blain said.

Both parents say they’re determined to give their kids the best life and as much love as time allows. They also hope to inspire other parents to do the same.

“It’s almost a blessing in a way that we have been given the opportunity to have a purpose and really have something to focus on with our kids. We’re able to really suck the most out of every moment knowing what’s going to happen in the future,” Jason Blain said.

Daxton and Saywer are heading to Chicago this week for a clinical trial in hopes of treatment that can help with their cognitive abilities. To follow them on their journey, you can visit their Facebook page. The family has also set up a GoFundMe account to help with medical expenses.

To read more about MPS II and its effects, click here

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