By: Flôr and Diogo Ferreira
Leonor is a special girl who loves to dance and sing. She has an outstanding memory and enjoys spending time with her family. But there’s one thing this 8-year-old doesn’t share with her twin sister, older brother or any of her friends. Leonor has CMT.
When Leonor was 3 years old, we noticed she was having trouble walking and struggled with her balance. We took her to see several doctors, all who told us nothing was wrong with her. We knew this couldn’t be right, so we kept going to more and more doctors. As we continued searching for answers, Leonor’s feet became deformed, she lost muscles in her legs and she was constantly falling. We felt powerless. As her parents, we’re supposed to have the answers. It was the most difficult and painful process we’ve ever experienced.
Finally, after four years of searching, we learned that Leonor had CMT. We had never heard of CMT until that moment.
Today, Leonor has difficulty walking and has to wear leg braces all day, every day. She lacks balance and cannot straighten her body, even when she’s sitting. CMT has also affected her hands. She has tremors in her hands and has difficulty using her fingers and hands to open jars, get a glass of water or hold a pen. She has lost muscle mass on both her feet and arms, and CMT has also affected the muscle and nerves in her eyes, requiring her to wear glasses.
Perhaps the hardest part is how other kids tease her because she is different. She has to wear braces that make her sweat in the summer. Kids make fun of her and stare at her. She just wants to be accepted, and she’d give anything to be able to run and jump like everyone else.
Taking Action for Leonor
When Leonor was first diagnosed with CMT, every doctor told us there was nothing we could do. They said it was just a matter of time until Leonor would be in a wheelchair for the rest of her life.
We refused to accept that. There’s always something we can do.
We changed our entire life to prove that to Leonor and other families like ours. Leonor is very committed in everything she does and never gives up. Neither will we.
One of the ways we take action is through the business we own, a digital strategy company called Cognipharma that works with pharma companies. We use our knowledge, resources and a part of the profit we earn to help CMT patient organizations find treatments and cures.
We have also taken action by starting a personal fundraising page to raise money for the CMT Research Foundation to help find treatments and cures for Leonor and the three million people like her who are living with CMT. You can visit our fundraising page here.
For our family, finding a treatment would be a dream come true. It would mean that our daughter would enjoy life without constant pain — one where she didn’t feel embarrassed because other kids make fun of her and stare at her. She’d have the chance to enjoy the same opportunities that every person should have.
When you donate to the CMT Research Foundation, you help millions of families like ours make our dream come true to find treatments and cures for the people we love the most.
Take Action to End CMT Now
Action to end CMT starts with us. Learn more about how you can start your personal fundraising page in three easy steps, or simply make a donation to the CMT Research Foundation now to speed urgently needed treatments and cures to families.
