Air Force Aid helps family provide 'Hope for Max'

Published April 15, 2010
By Staff Sgt. Daniel Bowles
Joint Base Charleston Public Affairs

JOINT BASE CHARLESTON, S.C. -- During the past six weeks, members of Team Charleston have had the opportunity to give back to four charities which aid Airmen and their families through the Air Force Assistance Fund campaign, which concludes April 16.

Each of the four charities serves a specific purpose, but for Capt. Aaron High, 15th Airlift Squadron deputy readiness flight commander, the Air Force Aid Society is one from which he has gratefully been able to receive, he said.

Throughout his career, Captain High said he always enjoyed giving each year during the annual AFAF campaign because of his relationship with a fellow Airman earlier in his career who was able to fly home for a family emergency using Air Force Aid.

In hindsight, he said he never thought he'd be on the receiving end, yet some years later he found himself seeking help during a difficult time.

The Air Force officer, prior enlisted, said he knew something wasn't right when activities began posing difficulty for his infant son Maximilian. What he and his wife Traci had yet to discover was that their son Max was suffering from a rare, genetic neuromuscular disease, and they have since began chronicling his progress on their Web site at www.hopeformax.com.

"I remember noticing something wasn't right about the time Max turned three months old," Mrs. High wrote. "He didn't seem to be moving his legs as much anymore and would rarely reach up."

The difficulties faced with day-to-day care for their young son required Captain High and his wife purchase a mobility chair for little Max and a new modified van to accommodate it. The cost was considerable.

Knowing how Air Force Aid had helped his friend many years ago, Captain High had questions about what AFA could do for his family as well.

"I wasn't quite sure what to expect, but I'll tell you, from start to finish with them it was a very easy process," Captain High said. "They helped us out a significant amount."

With aid from the Air Force and several others supporting his family, Captain High was on track to acquiring the necessities for his son, and by chance, he landed on an opportunity to purchase his vehicle from a local dealer which had the exact model he'd been looking for.

"There isn't a time that I don't get in that van and realize how lucky, how fortunate and how grateful we are. It wasn't a matter of if we would do it ... we had to do it," he said.

Now, going on 4 years old, Max still struggles with SMA, a disease which afflicts approximately one in 6,000 children at birth and is similar in symptoms to amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease.

Captain High said his son's diagnosis came as a surprise. How is it that he, his wife and both their families have no trace of this disease which suddenly appeared with Max?

As it turns out, the genetic disease appears with the presence of two recessive genes in an individual. In the case of Captain High and his wife, they had lived out their lives carrying one each and never knew it. When each of their genes paired in Max, the result was the occurrence of SMA. One in 40 individuals is a carrier of the recessive gene, Captain High said, and there is currently no cure.

In the past several years, Captain High's family has faced many challenges, he said. Besides being "frequent flyers" at the local hospital, the medical care Max requires at home is around the clock. Their steps are taken together, one day at a time, he said.

"He's a heck of a fighter," said Captain High. "He makes me very, very proud to go through what he's gone through. He's got a beautiful personality."