Angelman Syndrome awareness is one family’s main goal
CUSTER, S.D. — A family from Oklahoma was in the Black Hills today on a cross-country trip all to raise awareness for a condition that afflicts their young son.
Angelman Syndrome is a rare neurological genetic disorder that effects about 1 in 25,000 newborns, it is closely related to Autism and Cerebral Palsy. And for while that is what the Cook family thought their son Matthew had until further tests were preformed. When Matthew was three the family had another genetics test ran on him that came back indicating their son had Angelman Syndrome.
Now Make-A-Wish is working with the family to grant Matthew a wish, though he is still thinking about what that may be. For now the family has a travel trailer with Matthew’s face and all of his sponsorships painted on it and is traveling all across the country to spread awareness for Angelman Syndrome.
One of the main destinations is in Louisville, Kentucky where the city is hosting a research symposium and family conference. The ASF, or Angelman Syndrome Foundation, is hosting a week-long seminar for the whole family and they expect many families afflicted across the country to attend.
For more information you can check out the Cook family’s blog at: http//www.angelman.blog