One little girl is using the colors of the rainbow to raise awareness about mitochondrialRelated to the mitochondria. disease, the disorder that affects her. Alyssa Curley, the heart and soul of Team Lissy Loo of the MitoAction Energy Walk & 5K, decided to make and sell rainbow loom bracelets to benefit MitoAction.
Every year Alyssa’s mom, Kelley Curley, and family come up with a major project to raise funds on behalf of their team. Last year, it was a cookbook. This year, it’s loom bracelets. “Alyssa got the idea after getting a rainbow loom for Christmas,” said the Mansfield, MA, mom.
Alyssa and Kelley spend time every night making the bracelets – it takes Alyssa about 10 minutes to make one and Kelley about three minutes — and Kelley sells them online. So far they have sold more than 400!
Kelley’s lifelong mission is to raise awareness about the disease that affects her 7-year-old daughter. It’s a year-round effort that culminates at the MitoAction Energy Walk & 5K presented by America’s Compounding Center.
This year will be Team Lissy Loo’s fourth walk and MitoAction’s 10th! The event will be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. Register today at www.mitoaction.org/energywalk.
Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizuresEpisodes of abnormal electrical activity in the brain.; vision and/or hearing loss; gastrointestinalGI issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure.
Alyssa’s diagnosis is Mito Complex III, hypotonia, failure to thrive, dysmotility, asthma, severe GERD, and is tube-dependent. It’s been a particularly rough winter for Alyssa. She’s been hospitalized many times. She’s had back-to-back infections, back-to-back-to-back strep infections, bronchitis, and stomach infections that required numerous g-tube replacements. And while these issues – as well as Kelley’s own health issues (lupusA disease that occurs when the body's immune system attacks your own tissues and organs. Lupus induced inflammation can affect many different body systems including your joints, skins, blood cells, br) — have slowed the family down, it hasn’t stopped them from their mission.
In addition to the bracelet project, Kelley’s employer, Mini Miracles, holds a Hop-A-Thon for Team Lissy Loo and the family does canister drives and bake sales at local grocery stores that include information about Mito.
The walk is especially important this year after the Justina Pelletier case, said Kelley. “It’s still not a well-known disease,” she said. “It’s crucial to get people to know about and understand Mito.
“It’s important to get the word out about acceptance. Mito is real. It affects all members of the family.”
Alyssa is proud of her team and knows the walk is about raising awareness. But she’s also becoming more aware that she’s a little different from other kids. “She’s very self-conscious of her disease,” Kelley said. “She’s been teased and didn’t want to wear her tube anymore.”
But at the walk, Alyssa is a member of a loving, supportive MitoAction community that comes together every year to raise awareness and celebrate the lives of all who have Mito.
“MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.”
The event is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks.
Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at www.MitoAction.org.
For more information, email walk@mitoaction.org or call 888-648-6228. To register, visit www.mitoaction.org/energywalk.
