Middle schooler with heart disease lobbies to make a difference

Middle schooler with heart disease lobbies to make a difference
Amy & Allie Wolfe

On Tween Us, we love to feature middle schoolers who are doing great things and making positive changes in the world. Make the most of the last few days of February, American Heart Month, by learning about Allison Wolfe, an eighth grader who is a voracious reader, successful lobbyist, great daughter and survivor of heart disease that has required three open-heart surgeries.

Allison, who goes by Allie, is now 13, spent much of her tween years successfully lobbying for a law that requires schools in her home state of Massachusetts to have an standard emergency medical response plan in place. Another result of Allie's efforts is that all schools in the Berkshires now have life-saving AED devices.

The American Heart Association, with whom Allie works, recommends that AEDs -- computerized devices that can shock a failing heart to pump again -- be in all public places. As Allie's mom, Amy Wolfe, notes, "AEDs are lifesaving, and not just for heart disease, but in case of all kinds of emergencies. It has saved lives.  If they are in malls and gyms, why can’t we put them in schools?" Allie said simply,"It’s something that’s easy to do to help. Why wouldn’t people help you?"

Allie has tetralogy of Fallot, a complex condition that is actually four defects that occur simultaneously and is found in just  5 out of every 10,000 babies. While Allie's condition is rare, heart disease in children is, unfortunately, not as rare.

Approximately 2 million children in America have a heart condition.

Amy explained, "Children with heart disease are surviving at much greater rates, but we have to adapt the world for their needs, just like you would with allergies and diabetes."

To raise awareness of both heart disease and what children with heart disease need, Allie is speaking out. In addition to her work with the American Heart Association and with lawmakers, Allie is also talking to her peers. She recently gave a speech at her middle school to kick off American Heart Association's Heart Month.

Middle school is tough for any student, but having heart disease makes it that much harder. "Some days I wish my heart disease would just vanish, but it has given me the strength to be my own person instead of being like everyone else," she wrote.

She said she was "a little nervous" speaking to her classmates, more so than she is when addressing adults.

Allie said, "The hardest part of middle school is finding a group of friends.  People don’t understand who I am. I can’t do sports or do what they do, makes people not want to be my friend or stop talking to me."

Because of Allie's condition, her activities are restricted a bit and she needs quiet. She's found reading is a good way to not only get that needed quiet time but also a good escape. She added, "And you can learn a lot from reading." Her current book recommendations include Entwined by Heather Dixon, The Fault in Our Stars by John Greene, and the Trylle Trilogy by Amanda Hocking.

Amy talked of the difficulties of watching her daughter struggle with her health since birth while going through adolescence. "No two kids with the same heart disease are alike.  And no two kids are ever going to go through their tween years the same.  When Allie became a tween, I thought I was going to worrying about heart things, but now it’s that boys aren’t icky and she likes skinny jeans, I'm thinking 'Oh no.'"

In terms of advice she'd give other tween parents, Amy said, "Take pictures, all the time. Even at age 10, you can’t turn around and go back and redo anything. It just flies so fast."

Amy and Allison both described their relationship as "best friends." Amy said that somewhere along the many medical twists and turns, their relationship became something different, and that it's distinct from the relationship she has wit her two songs, Allie's younger brothers. Amy said, "There's just so much laughter." She said of her daughter, "She’s my hero. I would’ve given up a long time ago. She puts a smile on her face." She talked of how they have both had to fight hard, for Allie's health and survival, as well as what she needs, including the AEDs in schools.

Allie's mom may have said it best: "Allie is not going to be a victim.  There are things we can do. We can raise awareness. And she’s great at it."

Feb. 2014 Update: Allie's mom reports that she's doing well as a freshman in high school despite the fact that coping with heart disease, the accompany fatigue and the side effects of her medications are challenges she deals with daily.

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