Brinley’s Birthday Bash to raise funds for transplant

By LORRIE KINKADE

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Brinley Craig is held by his father Trampus during last month’s visit to the Mayo Clinic. A Jan. 17 fundraiser will help pay expenses for a return trip to Minnesota where Brinley, who suffers from Hurler Syndrome, will undergo a bone marrow transplant.

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To hear Brinley Craig’s infectious giggle, anyone unfamiliar with the little boy would find it hard to believe the medical struggles he has endured over the last two months.

In November, Trampus and Amanda Craig’s then 10-month-old son was diagnosed with mucopolysaccharidoses, also known as Type 1 MPS or Hurler Syndrome.

A hereditary disease, MPS causes damage to bones, joints, internal organs and the respiratory and central nervous systems due to a buildup of waste in the body’s cells caused by a missing enzyme. MPS is incurable and, if untreated, results in death at a young age.

Within days of the devastating diagnosis, Brinley was admitted to Minnesota’s Mayo Clinic for a battery of tests that included x-rays, MRIs, eye exams and blood tests. Returning home to Trimble County a week later, he began what will become a lifetime of weekly hospital visits for enzyme replacement treatments.

“He had an allergic reaction to the enzyme last week,” Amanda said in a phone interview Monday. “So the doctors will try giving it to him slower this week to see if that helps. There is no other option; he has to get this enzyme.”

Typically, the enzyme infusion would take five hours, but may be stretched out to more than 12 if the allergic reactions persist.

Amanda said she can already see developmental changes in her son since the treatments began to infuse his body with the enzyme that breaks down sugar and other substances.

“He’s eating better, talking, crawling – all of those things we didn’t realize he was doing slower than he should have been. The enzymes are making a difference,” she said.

Because he is one of the youngest children diagnosed with the illness, doctors are optimistic about Brinley’s chances for a long, full life, though the family’s struggle is far from over.

Brinley and his parents will return to Minnesota next month for a marrow transplant. Amanda said the hospital has located several matches from cord blood, however more tests will be completed before a final selection is made to ensure the best chance at a successful transplant.

Following the transplant, Brinley and his mother will remain in Minnesota for up to four months. It may be possible for Brinley’s two older sisters to stay with their mom at a Ronald McDonald House near the hospital, but Trampus, who has only six weeks paid vacation from his job, will likely return home.

Although the family has health insurance, travel expenses and charges not covered by insurance are already putting a strain on the family.

To help offset some of the expenses and keep Brinley’s medical treatment on schedule, the family will host Brinley’s Birthday Bash on Jan. 17 from 6-10 p.m. at the Moose Lodge in Madison, Ind. There will be live performances from Same Soul and Ryan Wardlow, raffles and baked goods. Brinley will make an appearance at the event, either in person or via web cam.

All money raised at the event will be deposited into a bank account to be used solely for Brinley’s medical care. Anyone unable to attend, but wishing to help financially, may make donations directly to MainSource Bank in Madison, Ind.