I never see little Scarlett Sepe without a giant smile on her face. But this one-year-old’s parents say her frustrations are growing as she struggles with a serious disease, unable to achieve some of life’s major milestones. About four months ago, Scarlett was diagnosed with Spinal Muscular Atrophy, a life threatening genetic disorder that causes muscles to deteriorate, eventually leading to respiratory failure. At every turn, I see her mom, Rachel Sepe, fighting back against this disease with a vengeance by doing everything possible to ease Scarlett’s challenges. And there’s a new way that we can help bring a little relief with the simple click of a mouse.
May is National Mobility Awareness month and there’s an organization that will be giving away one wheelchair accessible vehicle, a $40,000 value, to an individual who most needs it. That need, in this “Local Hero Contest”, is determined by votes. This prize would make a significant impact in the Sepe’s lives.
They face mounting medical costs, some of which insurance may not cover. The price of a wheelchair alone is about $40,000. And their home also needs to be made accessible to accommodate Scarlett’s new wheelchair. Plus, she’ll need a number of devices like the one seen in this picture, called a para-podium. Rachel says, “It allows Scarlett to stand upright – something she can not do on her own. It aids in respiratory functioning, digestion and developing bone density. She loves it!”
Scarlett’s story has received close to 8,000 votes so far in this contest. But she needs to have over 10,000 votes to reach a level that will advance her to the next round. We can vote once every 24 hours through this Sunday, May 13th. And if you use promo code “889” the first time, Scarlett will gain 5 votes, thanks to you. The next step is easy and will take you two seconds…
To vote, CLICK HERE. And please pass it on to any friends who might be willing to help.
It’s one last push and a little gesture that’ll help a Barrington family immeasurably. If they don’t walk away with the prize, they’ll end the contest knowing their community is behind them, with our words of comfort, our acts of kindness and our spare seconds at the computer. And I know how much that would mean to this mom.
To learn more about Scarlett’s story, click HERE to read the post we shared here last February called Help a Family with Wishes for Scarlett. To follow Scarlett’s story, visit the family’s website at WishesforScarlett.com where Rachel, who is also a fourth grade teacher at Barrington’s Hough Elementary School, is sharing regular updates. And to get a feel for the faces of SMA (Spinal Muscular Atrophy), watch this video and look for Scarlett’s cameo. Believe me, you’ll be moved. It motivates me to want to help, not just Scarlett, but the many children who face this disease.
P.S…I forgot to mention one thing…Bataille Academy of the Danse will be hosting a dance-a-thon to support the Wishes for Scarlett foundation. We’re all invited to join the fun with a night of dancing, games and refreshments for the family from 6:30 to 9 p.m. at Bataille’s Annex Studio, 102 Lageschulte Street in Barrington. Admission is $10 for the first child and $5 for each additional child and all proceeds will go to the Scarlett Sepe Special Needs Trust.
