This is Leonor. By: Flôr and Diogo Ferreira (Leonor's parents)
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.
CMT currently has no treatments available. But a cure is possible...
With properly funded and focused research, we believe we can find a cure for CMT during Leonor's lifetime. Better yet, during this decade.
Flôr is also the founder of Cognipharma, a company helping pharma, life sciences and healthcare companies in their digital initiatives. So, from the get go, we set out on a mission for Cognipharma - to help find a cure for CMT, and improve the life of everyone affected by this disease, as welll as the generations to come.
"...as parents we refused to accept that there was no cure and we decided to change our whole life in order to help Leonor. And find a cure. With the right focus, I'm positive we can do it!
Like Leonor there are 3 million people all over the world with this disease. We are aware of all the difficulties that these families face everyday and we want to make a difference!"
Cognipharma have partnered with the CMT Research Foundation to find treatments and cure for CMT, and are fundraising as a team to deliver on that goal. Help us bring hope to all these families all over the world. Your donation WILL make a differece.
Any donation that you make will be matched dollar by dollar by Cognipharma!