Back in December Connor and Caden Long were awarded Sports Illustrated Sports Kids of the Year. Caden is a young boy with cerebral palsy who is confined to a wheel chair. His older brother Connor competes in Triathlons with Caden in tow. Their story touched my heart and completely brought me to tears, but my words don't do it justice. Below is the video of the Long brothers.
Now, once you've whipped your tears I want to share another story with you.
This is my cousin, Drew. He has Batten's Disease.
Drew developed normally until the age of 3 with only a slight speech delay and was then diagnosed with epilepsy when he started having seizures. We knew this was not the answer. My aunt and uncle continued to search as our family watched Drew gradually lose his speech, use of his hands and the ability to walk and eat.
Drew was diagnosed with this rare neurological disease just days before his 5th birthday in January 2007. Batten Disease is a fatal degenerative neurologic disease that leaves children blind and bedridden with a life expectancy of 8-12 years. Those with Batten’s Disease are unable to produce an enzyme needed to clear toxins from the brain. Without it, permanent brain damage occurs that affects the child’s ability to talk, walk, see and even eat. Its onset usually occurs between the ages of 2 and 4 years. (source)
Drew has since been a part of stem cell research and has undergone surgeries on his hips and extensively on his back. (Before and After pictures as well as info of his back surgery here)
Though we currently do not see any degression with Drew's disease, we do not see any progression either.
There is no known cure for Batten's Disease.
Though Drew can only communicate through few facial expressions, we, as a family, know he loves being involved in our activities. Drew is a part of us and is always included.
Drew developed normally until the age of 3 with only a slight speech delay and was then diagnosed with epilepsy when he started having seizures. We knew this was not the answer. My aunt and uncle continued to search as our family watched Drew gradually lose his speech, use of his hands and the ability to walk and eat.
Drew was diagnosed with this rare neurological disease just days before his 5th birthday in January 2007. Batten Disease is a fatal degenerative neurologic disease that leaves children blind and bedridden with a life expectancy of 8-12 years. Those with Batten’s Disease are unable to produce an enzyme needed to clear toxins from the brain. Without it, permanent brain damage occurs that affects the child’s ability to talk, walk, see and even eat. Its onset usually occurs between the ages of 2 and 4 years. (source)
Drew has since been a part of stem cell research and has undergone surgeries on his hips and extensively on his back. (Before and After pictures as well as info of his back surgery here)
Though we currently do not see any degression with Drew's disease, we do not see any progression either.
There is no known cure for Batten's Disease.
Though Drew can only communicate through few facial expressions, we, as a family, know he loves being involved in our activities. Drew is a part of us and is always included.
Drew is included in wiffle ball games, fishing on the boat, bowling, attending baseball games (he loves the Phillies), among countless other family activities!
With this post and story of the Long Brothers as well as Drew, I wanted to bring emphasis on the fact that children with special needs not only on rely others to enhance their life, but that they can enhance others' lives so much more.
I thank God everyday for Drew and the lessons he has taught me.
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| Drew participating in the Special Olympics, April 2013 |
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| Family at Hershey Park, June 2009 |
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| Drew and I at the Drew's Hope Fundraiser, 2010 |
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| With Drew at the Special Olympics, April 2013 |
To learn more about Drew and his Foundation, Drew's Hope, please visit his website at www.drewshope.com
