Condition: Williams Syndrome (Heart condition)
City, State: OR
Club: North Medford High School Sparrow Club Service Hours: 959
Date Adopted: 8/08/2011
Alex's Story:(9/9/11) Just one look at 15-month-old Alexander McAuliffe is all it takes to make one's heart melt with compassion. Sweet, adorable Alexander was born with a rare genetic condition known as "Williams Syndrome." Williams Syndrome is a very complicated condition with numerous medical issues, of which cardiovascular disease is the most significant. Alexander's body lacks the elastin protein, which is responsible for giving muscles, organs, and other tissue flexibility. As a result, little Alexander's heart valves, arteries, and muscles get tight and brittle, which in turn, affects his entire body. Doctors say that Alexander will likely have at least one surgery on his heart during his childhood years. Learning disabilities and developmental delays are also things that make living with Williams Syndrome difficult. Although Alexander hasn't quite learned to crawl yet, he is making progress and just learned to sit up and to rock back and forth, thanks to physical therapy, which he receives on a regular basis. Alexander loves to be outside, but his family has to be careful to keep him out of the sun, due to hypercalcemia (elevated blood calcium levels). He also has very sensitive hearing so must be protected from loud noises. Because Williams Syndrome affects only 1 in every 10,000 people worldwide, there is little local support for families experiencing children with this condition. Money raised through Sparrow Clubs will be used to help offset the costs of medical bills not covered by insurance, but will also be used to enable Alexander's mother, Kristina, to travel to Boston in the summer of 2012 to attend the annual Williams Syndrome Association Convention, which will help her become a more effective advocate for Alexander and connect her with other families on the same journey. To learn more about Williams Syndrome, visit www.williams-syndrome.org.
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