Eleven-year-old Cleveland Clinic Children’s Patient Donates More Than 500 DVDs to Pediatric Cardiology Department
Resulting in “The Max Luis Lyles Video Library,” young patient holds Marfan Syndrome awareness fundraiser to purchase DVDs
This past March, the Cleveland Clinic Children’s Pediatric Cardiology department at main campus received several large boxes overflowing with DVDs for patients to enjoy. The more than 500 DVDs were postmarked from Newnan, Ga. – the hometown of 11-year-old Cleveland Clinic Children’s patient, Max Lyles.
“Max’s Cleveland Clinic DVD donation project began because my husband and I wanted to teach Max that it’s important to give back to your family, school, community and so on,” says Eliza Lyles, Max’s mother.
At first, Max wasn’t sure how he was going to give back, but he turned to his trusted pediatric cardiologist – Cleveland Clinic Children’s Kenneth Zahka, MD – for inspiration.
Dr. Zahka has been caring for Max since he was in second grade. Max and his mother both have a rare genetic disorder that affects the body’s connective tissue. Known as Marfan Syndrome, the disorder is found in only one in 5,000 children and adults.
With it, the connective tissue is very thin so any strong impact can cause a tear and potentially, internal bleeding. Marfan Syndrome can also cause aortic enlargement, which is an expansion of the main blood vessel that carries blood from the heart to the rest of the body, and is a symptom that Max and his mother both suffer from.
Max was diagnosed with Marfan Syndrome in September 2010. Max’s parents initially realized he wasn’t quite himself a few months earlier, in July, when he appeared to be very tired while playing in a Friday morning soccer game. Immediately following the game, Max went to a local physician who discovered Max had a heart murmur. This discovery prompted an additional test, which revealed Max had an enlarged ascending aorta with mild valve prolapse.
Max’s mother called the Cleveland Clinic Children’s pediatric cardiology department the following Monday and soon after, the family was headed to Cleveland for genetic testing with the knowledge that Max could potentially have Marfan Syndrome.
It was then, Max met Dr. Zahka and his assistant, Maryann – two people who Max’s mother says have made a lasting impression on him.
“I wasn’t all that surprised that Max wanted to ask Dr. Zahka how he could help the pediatric patients at Cleveland Clinic,” she said. “Max enjoys going to Cleveland Clinic and we initially told him that, similar to how Dr. Zahka has made his mark on Max, by giving back, Max could make his own mark.”
So, together, Max and Dr. Zahka decided the children who visit the pediatric cardiology department would benefit from having movies to watch in the waiting room. Max immediately knew how he was going to raise the money needed to purchase the DVDs – by selling golf balls.
For the past year, Max and his family have lived between the 5th and 6th holes of a local Newnan golf course. To them, golf is more than a sport or a leisure activity; it’s a way of life as it’s the only sport Max can play.
Because of the dangers Max faces from participation in contact sports, golf has been his saving grace – and he plays, on average, three to four times a week.
Upon moving to his golf-side home, Max began gathering and collecting stray golf balls. With buckets of golf balls sitting in his garage, he decided he would clean and sell them so he could then purchase DVDs for the children.
On February 22, during National Marfan Syndrome Awareness month, Max and a few of his friends set up a table on the cart path behind Max’s house with lemonade, Marfan Syndrome posters and lots of golf balls. They sold the recycled golf balls at a price of $1 for four balls.
When it was all said and done, Max raised nearly $600 for his Cleveland Clinic DVD donation project and educated an entire community on Marfan Syndrome. Max’s story was featured throughout The Heritage School where Max is a fifth-grade student, the Newnan Country Club, in the local town newspaper and more.
Max’s mother says the awareness Max has been able to generate about Marfan Syndrome has been incredible and has truly taught him one of life’s most important lessons: the value of giving back.
“We actually learned that a woman in our neighborhood has a granddaughter with Marfan Syndrome,” she said. “Additionally, per a suggestion by one of the golfers who contributed to Max’s fundraising efforts, the Newnan Country Club now plans to host an annual Marfan Syndrome golf tournament.”
Max’s parents helped him purchase, package and ship the DVDs to Cleveland Clinic where they have found a permanent home in the “Max Luis Lyles Video Library.” A selection of duplicate DVDs was given to the Cleveland Clinic Cole Eye Institute pediatric waiting room.
Max plans to make annual donations each March to the pediatric cardiology department.