Family Spreads Awareness for Son and Others with Marfan Syndrome

The birth of a child can be one of the defining moments for a couple. It’s a milestone of that brings with it a series of surprises and lifestyle changes that last many years. Lynette and Nathan Elam knew what they were getting into. They were prepared for the usual challenges of pregnancy and parenthood. When their child, Andy, was born with Marfan syndrome it was one of many surprises to come. Now, according to The Washington Times, the parents have become advocates for their son and his condition. Keep reading to learn more, or follow the original story here for further information.

Marfan syndrome is an inherited disorder which affects the body’s connective tissues. The most commonly affected areas of the body include the heart, eyes, blood vessels, and bones. Marfan syndrome is caused by a defective gene which is normally responsible for producing the elasticity and strength of connective tissues. Damage to the aorta is one of the biggest risks associated with Marfan syndrome. Click here to learn more about Marfan syndrome.

Lynette describes Andy being born with Marfan as “a big surprise.” Usually Marfan syndrome is passed down genetically – originating with a parent who has the gene for it. Neither Lynette nor Nathan possess this gene. Andy is one of the exceedingly rare cases where the mutation occurred spontaneously.

26 doctors work on Andy’s condition at the Boston Children’s Hospital and Professional Center for Child Development. Andy is blind, uses a feeding tube, and lives with scoliosis, emphysema, and bronchomalasia. He’s been through six hospitalizations, and nearly as many surgeries. Lynette describes the whole thing as “a crazy ride.” She says she feels like she’s getting another degree from all the things she’s learning and experiencing.

Despite this, the Elam family says Andy is happy. He behaves like what Lynette describes as the “classic almost two year old.”

After Andy was born the Elam family turned to the Marfan Foundation for assistance. The foundation was able to connect the family to others who had similar stories to their own. Last year the Elam family also participated in the Marfan Foundation’s sponsored Walk for Victory. The Elam’s raised $22,000 for Marfan research and support.

“We would love to raise awareness of Marfan and get people to recognize the signs,” says Lynette. “The Marfan foundation’s mission is raising awareness,” she continues. “It’s very important for people to know what it is to prevent the potential death of someone who has it.”

As of June 12th, they had already raised $18,336 for the 2018 event, and had even invited other couples to join them on the walk. You can donate and check out their fundraising progress here.

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