Alex’s Make-A-Wish

Basketball Recharged Life's Bounce To Local Family Battling Their Son's Critical Illness

Alex Koch's smile is as big as a basketball court. As a noticeably gregarious and social youth, the 17-year-old lights up roomfuls of people with his grin and irresistible laughter. He's quick to grab other's hands to share intimate moments, doesn't hesitate to join them in walks and definitely is always ready for a game of hoops.

...He just can't verbalize any words he wants to share. 

Each day, Alex deals with a genetic disorder that only 1 in 70,000 people around the world have. Called Sanfilippo syndrome, or also known as mucopolysaccharidosis type III (MPS III), it's named after Dr. Sylvester Sanfilippo, one of the U.S. doctors who described the condition in 1963. It's a rare, autosomal-recessive enzyme storage disease that affects the brain and spinal cord. It's caused by a buildup of large sugar molecules, which essentially manifest as protein overload in one's body. When those types of subcells are working properly, they break down and remove fats and sugars from cells.

This condition is a progressive, metabolic disorder that eventually causes fatal brain damage. There isn't yet a known cure, and the average lifespan of those experiencing it is 17 years.

Alex's Nashville-based parents, Matt and Julie Koch, began to worry when they started noticing cognitive, verbal and behavioral developmental delays when Alex was 3-5 years young. After years of doctors’ appointments, therapies, an incorrect diagnosis, and watching their son regress, they eventually learned Alex had this syndrome as he turned 10 years old. Matt says they got around the previous brickwall of unknowns when they finally discovered a Yale Medical Center university study in which Alex could participate. 

"Part of the challenge was that not a lot of doctors had seen this disease to even recognize it. But after the Yale diagnosis results, we were able to connect with experienced people who could help," says Matt.

"Although Alex can't verbalize, people say they always feel good interacting with him. We are blessed every day that we have Alex in our lives."

Wishing On A Court

When Julie and Matt were approached by a Make-A-Wish Middle Tennessee nonprofit volunteer, they quickly realized what might make a wonderful difference for Alex:  an outdoor basketball court. Alex had been playing with a basketball since he was 2 years old, recalls Matt.

The court became a reality in 2014, and was a complete surprise to Alex. 

That court allowed Alex to play sports with his brother, Jaxson, and anyone else who will take up a ball. Julie says the now 5-foot-11-inch Alex uses the court constantly. "He's probably gone through 50 basketballs over the past six years," chuckles Matt. 

"Make-A-Wish is simply life-changing for the youths they assist and their families," says Matt, who decided to give back to the organization by serving as one of its board of directors for the past five years. 

"Make-A-Wish families typically have just been through a tough medical procedure or news. When the wish is granted, the excitement from that wish provides the child and family a happy distraction to their current diagnosis or situation, and lets them just be themselves," adds Matt.  

The basketball court was so important to Alex, his family even negotiated with homeowners association representatives of the new subdivision into which they moved 1.5 years ago that the court could be relocated. "There's no way Alex would want to be anywhere without that court. Make-A-Wish actually is a gift that keeps giving to us every day, and we're so grateful," Matt assures. 




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