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Lamar family raises awareness of daughter's rare health condition

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Monday, November 01, 2010

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When Christie and Martie Tolson noticed their young daughter wasn’t reaching age-appropriate milestones, they didn’t want to admit their daughter was facing a serious health issue.

“We knew something was wrong. That’s why we kept putting it off. We didn’t want there to be anything that was wrong,” Christie said.

Their 21-month-old daughter, Holly, was diagnosed with Spinal Muscular Atrophy, or SMA, more than a year ago.

SMA is a motor-neuron disease that affects voluntary muscles, which makes it nearly impossible for her to swallow, breathe, move her arms and legs and hold her head upright without assistance.

Coming to terms with Holly’s diagnosis was a difficult step for Christie and Marty, but the pair said they would do anything for their daughter.

“We didn’t understand what was going on, and we just pursued it so we could find more answers and see what was going on,” Marty said.

Holly has a full-time nurse who helps take care of her daily needs, include being fed a cocktail of medications and vitamins by a tube three times during the day and continuously through the night.

Christie wakes up three or four times every night to check on her daughter, despite the daily precautions to keep Holly healthy.

“You take so many small things for granted and you worried about small things — we don’t anymore,” Christie said.

Children with SMA Type 1 typically don’t live to see their second birthday. Holly’s birthday is in January.

Her parents hope Holly, who is cheerful and cognitively skilled, will continue to fight SMA as she has done since she was born.

“She’s one of the lucky ones,” Marty said.

Marty and Christie said getting a proper diagnosis and treatment plan is all about finding the right doctor for a family and their child.

“You can read about how to bake a cake, but until you actually learn how to do it, you don’t have that experience. This is something that I wouldn’t want any family to have to experience,”

Holly’s parents said their story isn’t about them or their daughter — it’s about raising awareness for SMA in both adults and children.

“Sometimes it’s hard, you have to swallow your tears and you choke yourself up a little but, but I think it’s good that the other children learn as much as they can,” Christie said.

Holly’s parents said they hang on to a lot more than the prognosis.

“A lot of doctors will tell you to take them home and love them, that’s all you got, but that’s not all you have. You have hope,” Christie said.

Even though Holly can’t verbally communicate with her parents, they have other means.

“When she smiles at you, you can just see the love in her eyes,” Marty said.

One in every 40 people carries the SMA gene.

There is no cure or long-term treatment plan for those diagnosed with SMA.

 

©2010 Media General Communications Holdings, LLC.

Author: By Elizabeth Lamb
Source: SCNOW
2.27272727273
2.3 from 11 votes
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