Air Force aid helps family provide 'Hope for Max'

by Staff Sgt. Daniel Bowles
Joint Base Charleston Public Affairs

4/15/2010 - JOINT BASE CHARLESTON, S.C. (AFNS) -- During the Air Force Assistance Fund campaign, Airmen have the opportunity to give to four charities that help Airmen and their families.

For one Joint Base Charleston Airman, the donations given by the Air Force family helped him care for his own family, specifically his son max, who was diagnosed with a rare, genetic neuromuscular disease.

Throughout his career, Capt. Aaron High, 15th Airlift Squadron deputy readiness flight commander, 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 the Air Force Aid Society.

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 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 spinal muscular atrophy.

"I remember noticing something wasn't right about the time Max turned three months old," Mrs. High said. "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 to purchase a mobility chair for Max and a new modified van to accommodate it. The cost was considerable.

Knowing how Air Force Aid Society 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 AFAS and several others supporting his family, Captain High was on track to acquiring the necessities for his son.

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

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

The AFAF campaign ends April 16.