Finding Hope for Hannah
In his continuing quest to find good news in the capital region, Jerry Gretzinger has discovered that not all of it starts with a smile. On the contrary, sometimes the most encouraging stories begin with the most discouraging news. Like the following Take a Break report about a Clifton Park family that somehow found hope after doctors told them there was none.
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A child is a gift.
A gift of joy, love, compassion and hope.
Hope for what the little person may someday grow to be.
Matt and Lori Sames of Clifton Park love their little gift, 4 year old daughter Hannah. And they were full of hope until a surprise diagnosis seemd to take it all away.
"We really had no idea there could be health concerns with hannah, "says Lori Sames.
Hannah was doing everything a young child should. But just after turning two years old, she started walking funny and it got progressively worse. For more than a year, no one could tell the Sames' what was wrong with their little gift. Finally, doctors figured it out. Hannah was diagnosed with Giant Axonal Neuropathy, or GAN, a rare disorder which first effects the ability to walk and eventually inhibits nearly every bodily function. Matt and Lori remember how doctors told them to enjoy their daughter because there is no cure.
"You're telling us this is a death sentence for our child?" Matt recalls asking doctors. "And they said yes, it is. And then we both just fell apart.
But sitting around and watching their daughter die was not something this couple was willing to do.
What happened next, Lori says, was a full court press. She and Matt discovered that previous GAN research had made strides but, since it is so rare a disease, ran out of funding. They knew the key to helping their daughter was raising money. So they founded Hannah's Hope, a website and public charity, and contacted leading GAN scientists throughout the world and asked them to get back to work.
Matt says, "We've had some of the most brilliant minds from Harvard, Mass General, Childrens Hospital in France, Stanford, Columbia, Johns Hopkins. All these great institutions and they're all willing to do it."
In August, Hannah's Hope will host the first ever symposium on Giant Axonal Neuropathy, bringing together the world's top researchers to share findings and encourage new experiments. Matt and Lori say they've been told, with the proper resources, GAN could be cured in a few years. But it won't come cheap.
Matt says they need to raise "about 500 thousand dollars annually".
Donations, and sales of t-shirts, pens, and wrist bands have already totalled over 50 thousand dollars. A great start but still a long way to go.
In the meantime, 4 year old Hannah keeps on smiling and playing with her two older sisters. She knows nothing about her condition. Mom and Dad are hoping she's cured before they need to have that conversation. Although Hannah has started asking some difficult questions.
"We were walking to the car," Lori recalls, "and she asked me if she would still feel tired walking when she was an adult. It does take a lot more of her energy to walk, especially on the grass. We were walking across the field and I said 'No honey, you won't feel tired walking as an adult.'"
Lori can say that because she believes it to be true.
The hope that was once gone? The Sames family went out and got back.
And that's been a gift for all of them.
IF YOU'D LIKE TO HELP, YOU CAN. Hannak's Hope is hosting BIG GOLF TOURNAMENT July 28th at Colonie Golf AND Country Club. For additional information on making a donation, visit www.hannahshopefund.org.
To submit an idea for Jerry's "Take a Break" segment, send him an email: jerry@cbs6albany.com
