Sharing Our Journey with 4H Leukodystrophy
Welcome to a glimpse of our world. About a year ago we were given the frightening news that our daughter, Alexis had a rare deteriorating condition called 4H Leukodystrophy. Although we are devastated with the news, we are clinging on to hope for a treatment, specifically gene therapy, that is very early in its research. Our goal is to create awareness, provide a sense of community and continue to share her beautiful smile and energy!
Meet Alexis...
She is an avid music and animal lover! She loves to dance and is currently in a ballet/tap class in a dance studio. She's tenacious and hardworking, keeping her body moving. She loves all animals and is extremely empathetic, wanting to bring home every one of them! From riding horses to petting goats, she’s always up for an animal adventure!
Alexis is a kid with a smile on her face, eager to explore and meet new people. She tells us "That's my friend," to any little girl she meets!
Our sunshine. Our inspiration. Our babygirl.
YAYA Foundation
We have helped over 200 vulnerable communities worldwide
The goal and mission behind
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How our charity got started
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What are we doing to assist these communities?
Research Library
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Patient Data
Collection Program
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Food & groceries
4H Leukodystrophy
Researchers
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Tips For Reading
Scientific Papers
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Research Roadmap
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Health & insurance
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Join us on this journey to help give Alexis a chance to a long beautiful life!
“There are only two days in the year that nothing can be done. One is called yesterday and the other is called tomorrow. So today is the right day to love, believe, do and mostly live.”
Learning how to live with 4H Leukodystrophy
“We suggest Alexis start hippotherapy,” were the neurologist’s words. 😳 What is THAT? Where do I find this? Ride a horse at 3 years old? A pony right?
So many questions… So many thoughts…
Once the shock wore off, I was on a mission. The only thing I was certain about was that she would get the best! I called so many places! Places ranging from 15min away to an hour away and they all had waitlists. I began considering different cities close to family and stumbled across Red Arena.
❤️It was God sent 🙏🏼 There is no other explanation. They have been the highlight to our week, a community of acceptance, and the most amazing therapy!