In September of 2017, Kevin and Rebecca Keller's son, Mason, received a diagnosis that one in every 5,000 young boys receives each year. Mason, who lives in York, was diagnosed with Duchenne muscular dystrophy, a degenerative disease.
"This affects every muscle in his body, even his tongue," explained Rebecca, who added that people with Duchenne eventually lose their ability to eat without a feeding tube. All cases of Duchenne are genetic, but only some are hereditary. In Mason's case, Duchenne is the result of a spontaneous mutation in the genes. Mason has trouble navigating stairs, is prone to falling and has difficulty with fine-motor tasks like writing. But, his mother said, there is hope.
"We've been involved with clinical trials and gene therapy," she stated, "and once a week he's been getting an IV infusion that's helping his body to make a little bit of the protein that he's missing. That has made a dramatic difference for him, so that's hopeful."
Inspired to focus on that hope, earlier this year the Kellers founded Love Gives, a nonprofit with a mission of helping children like Mason. The organization will host the second annual Mason Keller Golf Tournament and Silent Auction on Friday, Sept. 17, at Cool Creek Golf Club in Wrightsville. Last year, the Kellers fundraised through the Parent Project Muscular Dystrophy, but now their efforts will support their own nonprofit, which focuses specifically on local families.
Proceeds from the tournament will help make improvements to Susquehanna Waldorf School in Marietta, where Mason, now 8, attends as a second grader. The school is in a building built in 1899 that, although it's a historical gem for Marietta, needs accessibility updates to accommodate children like Mason.
"The first order of business is getting two stair lifts for the main stairway," Rebecca explained, adding that eventually stairs to the lower level and the main entrance will also need stair lifts. Each stair lift costs between $3,000 and $4,000. Another goal is to modify the school's bathrooms, which are on the smaller side and therefore difficult to navigate with a walker or scooter.
Rebecca hopes that their efforts at Susquehanna Waldorf School will benefit other students in the future and that Love Gives can help families throughout central Pennsylvania. The organization is planning a running-focused fundraiser for the spring as well.
When he's not in school, Mason loves playing with remote-controlled cars and Legos, and he enjoys fishing with his father. "He's very close to his sister, who helps him when he needs things," Rebecca said of Katie, who is in first grade at Susquehanna Waldorf School. "They have a lot of fun together."
Rebecca noted that learning her son had Duchenne was a difficult experience, but she likes to focus on the positive.
"Having this diagnosis really gives you a great deal of humility," she stated. "It helps you see how much love and support there really is in the community, and that's encouraging because some days can be really hard."
For more information on Love Gives or to register for the golf tournament, visit http://www.ourlovegives.org.
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