Alexis Mariana Rodriguez was born in December 2017. She loves wearing bows and skirts, showing off her doodling skills, and being a big sister to her brother Alan. When she isn’t in school surrounded by her friends and caring teachers, she may be found riding her bike or in the studio at Art Beat Dance Center. She also spends her days undergoing therapy.
Having met or exceeded all of her milestones as an infant, Alexis’s parents, Eileen and Abel, were surprised when she was late to start walking. Their first stop was with an orthopedic specialist who said there was no need to worry, that she would be up and moving in her own time.
“Two months later, Alexis was walking,” says Eileen. “She has always been super active and full of energy, and has a very determined and persistent personality. She loved to be outside when she was little and we would walk to the park effortlessly.”
At 21 months, it was found that Alexis had myopia. Additionally, her front teeth had never grown in and she was beginning to fall sideways while walking. Even Alexis’s ballet teacher noticed how rigid her legs would be in an attempt to hold herself up differently. With the lack of clarity from specialists, Eileen’s concerns grew as both a mother and a medical professional.
“It was a conversation with a friend of mine at a park that finally led me to call the neurologist,” says Eileen. “We got in within a week, which was amazing. They are extending Texas Children’s to Austin and this particular neurologist was coming monthly. It was crazy how things fell into place for us.”
Upon doing an MRI and genetic testing in September 2021, Alexis received an official diagnosis of 4H leukodystrophy. This is a rare condition that affects the brain, which was only discovered about 11 years ago and currently has no treatment or cure.
“It took about six months for me to finally start my Instagram account,” says Eileen. “I knew there had to be a bigger reason, a bigger purpose, for us to be going through this. If we could expose this disease and what it does to these kids, people would be more aware of it. Geneticists would think about it. When kids have such a severe eye problem at such a young age, it should pop up in ophthalmologists’ minds.”
Since kicking off her online efforts to raise awareness and funds for 4H leukodystrophy, Eileen has met other families in similar situations. She has received the support of her FIT4MOM community, as well. From there came the idea by a friend to host a fun run to get people to #MOVE4ALEXIS.
“It was a great turnout. We had shirts, we got the park—everything worked out really well. This year, we did the same thing, but went out to get even more exposure,” says Eileen. “We sent the money we raised to the Yaya Foundation, which is the foundation we’ve been working with that has all of the contacts for researchers who are working on a treatment.”
While they have raised $32,000 for the Yaya Foundation and are still going strong, the Rodriguez family set out to make their second fun run centered around therapies for Alexis. Specifically, they have hope for the incredible advances in technology that the NeuroSolution Center of Austin brings.
“It’s hard to put our story out there. I was never a social media person to the point that I am now, but it’s an ever-evolving thing,” says Eileen. “I just want the world to know that 4H leukodystrophy exists, and that Alexis is full of life and deserves to live.”
Find out more about Alexis’s journey by going to ourjourneywith4h.org (where you can also donate) or by following @ourjourneywith4h on Instagram.
