Give Alexis a Chance at Life

On September 10th, 2021 my twin sister Eileen and her husband Abel received the devastating news that their precious 3-year-old baby girl, Alexis Mariana, has a very rare progressive brain disease called 4H Leukodystrophy, the POLR3B type. This disease will eventually rob my niece of all mobility, including walking, eating, and talking, as well as cognitive abilities. There is currently no cure or treatment.

The helplessness as a parent, aunt, grandparent, and friend has been overwhelming, but we do have faith, and there is hope! Research has begun for 4h, and we need your help! The Yaya Foundation 4hLeukodystrophy is working with scientists to help fund and advance this research and associated clinical trials. Funding is crucial to help make treatment a reality in the pharmaceutical world and give children like Alexis a chance at life! THERE IS HOPE!

Life as they knew it had changed forever. Eileen, who is a Physician Assistant, has to stay home, and their days are now filled with therapies to help keep her mind and body remembering that she can still use it. It's become survival mode because if she doesn't use it, she will lose it. There are absolutely no words to describe the pain the family is going through. But we can't sit back and watch this disease take over! Please help us spread awareness and raise these crucial funds! The more awareness we generate and the more money we raise, the better chance we have at stopping the progression and finding treatment.

THIS IS A RACE AGAINST TIME!

She is our happy little Alexis with her contagious smile and laughter. We want to hold on to that as long as possible and give Alexis a chance at life!

For more information about the Yaya Foundation 4hLeukodystrophy please visit:

https://yayafoundation4hl.org/

How can you help give Alexis a chance at life:

1) GIVE whatever you can! No donation is too small.

2) SHARE on social media. (@ourjourneywith4h)

3) EMAIL this page to friends and family.

4) Fundraise with your local communities.

Grateful and Hopeful,

Leila and Jason Higham

(Alexis' godparents)