SHRINER FEBRUARY 2018
Details for Al Menah activities for February 2018.
Details for Al Menah activities for February 2018.
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An entire family of patients finds hope and healing at Shriners<br />
Hospitals for Children<br />
Dad, daughter and two sons are all<br />
patients of Shriners Hospitals for<br />
Children<br />
6<br />
Sam was born with Marfan syndrome, a<br />
genetic disorder that affects the body’s<br />
connective tissues. Connective tissue holds all<br />
the body’s cells, organs and tissues together.<br />
It also plays an important role in helping the<br />
body grow and develop properly. Because<br />
connective tissue is found throughout the<br />
body, Marfan syndrome can affect many<br />
different parts of the body as well. Features of<br />
the disorder are most often found in the heart,<br />
blood vessels, bones, joints and eyes.<br />
According to the Marfan Foundation, about one in 5,000 people have Marfan syndrome.<br />
About three out of four people with Marfan syndrome inherit it, meaning they get the genetic<br />
mutation from a parent who has it.<br />
Scoliosis is common in individuals present with Marfan syndrome characteristics. At the age<br />
of 14, Sam had a successful spinal fusion surgery performed at Shriners Hospitals for Children<br />
— Chicago. As Sam continued to grow during his teen and adults years, he developed, remained<br />
healthy and encountered minimal additional effects from Marfan syndrome. He played every<br />
sport available at the small Christian school he attended and achieved all life’s major milestones.<br />
Sam and Carla married in 2000 and were under<br />
the impression that Marfan syndrome skipped a<br />
generation. Due to health issues also present on<br />
Carla’s side they understood that it might be<br />
difficult for them to have children. When the<br />
couple found out that they were pregnant with<br />
their first child, Jadon they were beyond elated.<br />
Shortly after birth they recognized that Jadon<br />
presented with characteristics of Marfan<br />
syndrome.<br />
Read more at https://www.shrinershospitalsforchildren.org/lexington/news-and-events/anentire-family-of-patients-finds-hope-and-healin-514