Day 5 of Mitochondrial Disease Awareness Week Join us as we Stand up for Mito! RECIPE FOR AWARENESS Kelley Curley and Team Lissy Loo spread the word about Mito Kelley Curley is on a mission to raise awareness about mitochondrial disease – and her message has reached as far away as Russia! As captain of Team Lissy Loo, a regular at the MitoAction Energy Walk & 5K, Kelley does what she can to let people know about the disease that affects her 6-year-old daughter, Alyssa. “It’s not a well-known disease,” said the Mansfield mom, “so it’s imperative to put the word out there about the disease. The more awareness, the more support.” Alyssa has Mito Complex III, hypotonia, failure to thrive, dysmotility, asthma, severe GERD, and is tube-dependent. She is a loving, caring, high-spirited, assertive individual who on most days has such a zest for life no matter what she’s going through, her mom said. She participates in dance class, Girl Scouts, and CCD class. “I want her to be as normal as she can. Nothing will set her back,” Kelley said. Starting in January each year, Kelley puts together a plan of action to raise awareness and funds for Team Lissy Loo leading up to the MitoAction walk. Kelley also starts planting the seeds for people to sign up for her team. As always, the awareness-raising is a family affair, including Kelley’s other children, Shannon, 23, Matthew, 20, and Emily 15, and Kelley’s significant other, Chris. This year, the family created a cookbook, held a canister drive and bake sale at a grocery store, and did a Hop-A-Thon. The cookbook was Alyssa’s idea. She was at a book fair at her day care and saw a cookbook there for $20. Kelley told Alyssa they could make one for less than that, and Alyssa said, “We’ll make one!” Thus, the first volume of the cookbook was born. And, of course, Alyssa’s photo graces the cover. Using social media and friend connections, the family gathered more than 100 recipes and photos. The books sold for $10 each. Alyssa has already told Kelley they’ll be doing a cookbook every year. In an effort to save on costs, Kelley printed the cookbooks herself, but a Mito mom – Crystal Evans-Pradhan – has offered to help with printing Volume 2 next year. Kelley took to social media to sell the books, starting with Mito groups, then online yard sales. In her posts online, Kelley, in part, wrote: “Please help my daughter support her mission to sell 300 books by purchasing one right now!!! Alyssa is a beautiful, sweet little 6-year-old who has Mitochondrial Disease. She has been through numerous surgeries, hospital stays, painful procedures, several tube replacements, and therapy over the past six years …” Kelley has sold more than 300 cookbooks. “I’ve sent cookbooks all over the country,” Kelley said. “The farthest cookbook I sent was to Russia, to a Mito family.” Kelley has also sent cookbooks to Austria and Germany. And Alyssa’s favorite recipe in the book? Peanut butter and jelly, with magic jelly! The canister drive/bake sale was held at a local Stop & Shop store. Kelley and Emily baked brownies, breads, cakes, and cupcakes. At these types of awareness events, it’s not unusual that no one has ever heard of mitochondrial disease, but while manning the table at this event, Kelley met three people who had actually heard of it and were living with it. “One woman started crying when she saw the sign,” Kelley said. “Her niece has it and she’s 5 weeks old.” Kelley started the Hop-A-Thon last year at the day care center where she works, Mini Miracles in Natick. The day care kids secure pledges for every minute they hop. This year, the Hop-A-Thon raised $700! Because of all of Kelley’s efforts, Team Lissy Loo received an Awareness Award at the walk. The members of Team Lissy Loo, 39 strong this year, love the MitoAction walk. “I like that everyone comes together to celebrate,” Kelley said. “It’s an emotional time for me on that day.” One of the highlights for Kelley this year was meeting Mighty Matthew’s mom. On top of all the awareness- and fund-raising, working full time, and taking care of her family, Kelley herself is dealing with disease. She has lupus and experiences many of the same symptoms that Alyssa does, including fatigue, soreness, and extreme muscle pain. She also has osteoarthritis and Sjogren’s. “There are days I’m so sore I can’t even get up,” she says, nothing that somehow she does … because she must. “You have to do what you have to do,” she said. Her mom, Maureen Kilroy, and Chris are also big helps to her. Kelley’s advice is simple: “Do your best. Trust your gut instincts about your child. Be proactive about your child. And raise as much awareness as you can.”
Posted on: Thu, 19 Sep 2013 13:29:05 +0000
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