5,000 mile road trip to cure SMA

By Philippe Djegal - email

PALESTINE, TX (KLTV) - They are crossing thousands of miles, hopeful that a cure is around the corner.

Bill and Victoria Strong's 20-month old daughter suffers from Spinal Muscular Atrophy - a disease doctors say is terminal. Now, they're crossing the state's in an RV, trying to raise awareness of the disease. On an East Texas stop today, they said that a cure is possible.

The Strongs started their journey in Santa Barbara, California. When it's all said and done, they will have traveled more than 5,000 miles campaigning for a cure.

"Finding out you're going to lose your daughter most likely before the age of two to a terminal illness that's untreatable is obviously devastating," said Bill Strong.

20-month old Gwendolyn was diagnosed with Type-1 S.M.A. She can move her head and hands, but that's about it.

"She just doesn't have the back up to have a really strong immune system," said Victoria Strong. "So, literally, a very simple cold could kill her."

"Most of Gwendolyn's peers in her kind of S.M.A group have unfortunately passed on and that further just reminds us how much we have to cherish every single second we have with Gwendolyn and how lucky we are to still have her with us," said Bill Strong.

And, they want the rest of the world to know how special their daughter is too by telling their story, traveling from state to state, asking for donations to help find a cure.

"Anyway we could touch people in any community and make them aware of the disease is the step in the right direction for us for future S.M.A generations," said Bill Strong.

The Strong's hope to raise $50,000 from this trip that would go toward funding research on the disease.

Not even half way through their trip, they've already reached $30,000.

"We do believe in the power of prayer, and we do believe Gwendolyn is an amazing gift and we know we've been so lucky and so blessed to have her,"said Victoria Strong.

The Strongs are going to be on the road for a while. if you'd like to help them, we've set up a link on kltv.com. Click on the Big Red Box on the home page and click on the link "Finding a Cure for S.M.A."

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