Leslie Hamburger via Crowdrise
November 13, 2011
BENEFITING: A-T Ease Foundation
ORGANIZER: A-T Ease Foundation
EVENT DATE: Nov 06, 2011
Jake is 24, a good looking guy with a great smile and he has A-T: Ataxia Telangiestasia. Jake was diagnosed with A-T at 2, which was a fairly early diagnosis. But because Jake was Mary’s second son, she knew something wasn’t quite right with his development. Mary had been to countless doctors who kept placating her with a diagnosis of ear problems or other minor medical issues. She persevered trusting her mother’s instinct that something wasn’t right and took him to UCLA Medical Center where Jake was diagnosed with A-T. I’ll never forget the day Mary called and told me that Jake had A-T. I clearly remember sitting at our dining room table in our home in Los Angeles. I couldn’t even begin to comprehend what the diagnosis meant for Jake, Mary, Larry and Matt, his brother; and I’m sure Mary didn’t know either. It all seemed so shockingly surreal. David and I weren’t even married yet and I was eight years away from becoming a mother, but Mary’s news reduced me to tears.
22 years later, Jake is the most remarkable person I know and I now understand that crying for him would almost be an insult. A-T has taken Jake on an amazing journey filled with challenges most of us can’t even begin to imagine. He battled cancer (lymphoma) at age 10 and has had to adapt to life in a wheelchair; but as you can see from the pictures and the video, that chair has not limited his life.
As the saying goes, “Behind every great man is a woman”, so Jake has Mary and Mary has made Jake’s life limitless. Remember Sigorney Weaver’s character, Ripley, in “Aliens”, the second movie? She had to protect the orphaned girl whose parents were killed by the aliens. Ripley was invincible against the aliens! Mary’s sort of like Sigourney Weaver in that movie, but her alien is A-T. Mary has been fearless, relentless and selfless in doing whatever she needs to do to insure Jake gets the best medical care and that he led as typical a childhood as possible; and she and Larry continue to provide that for him even now that’s he’s a young man.
Jake, Mary and Larry could have plenty to whine and complain about. They could feel sorry for themselves….for each other. But they haven’t and they don’t and they never will. So on November 6th, for Jake, Mary and Larry, I'm running my fourth marthon – the 2011 ING NYC Marathon; because if Jake, Mary and Larry can rise to the challenges of the past 22 years without self-pity and only a positive attitude, then I certainly can run 26.2 miles to help find a cure for A-T.
So please go back to the top of the page and select "Donate" to make a donation today. Thank you! xoxo