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Introducing: The Felix Foundation

Beatrix Whipple
Feb 21 5 minutes read

The Felix Foundation

In February 2022, Felix Gomez was diagnosed with Tay-Sachs Disease. His parents, Kate and Alan, are overcome with emotion from the news but are hoping to make every lasting moment in their son’s life extraordinary.


In April 2022 we interviewed the Gomez Family to learn more about their story and what their daily lives look like with a child diagnosed with Tay-Sachs.


We heard you guys just got back from a trip. Where did you go and are there other places you would like to take Felix?

We just got back from Big Sur and Monterey. Felix loves the Aquarium of the Pacific here in Long Beach, so we brought him to Monterey Bay Aquarium. In the near future, we mainly want to take him to Paris, France. We spent our honeymoon there, and want to have a chance to show him around the city we love. We have a friend who lives there and is a photographer. We thought it would be nice to spend some time with him and have him take photos of our family around the city to capture the memories.

Can you tell us about the moments leading up to finding out Felix has Tay-Sachs?

We noticed he wasn't hitting milestones that he should have. For example, he wasn't crawling. And we started to get frustrated. Not with Felix, but with the situation. We felt that there might be something wrong because we could look around and see kids younger than him full-on crawling. 

When we told the doctor, she ignored us. Worse than that, she told us everything was fine. But we’re his parents, and we were noticing that something significant was going on. We ended up having to go to a different doctor, who confirmed that something was in fact wrong. The new doctor told us that Felix should be crawling or at least trying to, but he wasn’t. 

We finally got him into physical therapy and doctor’s kept testing everything all the time. We spent more time in doctor's offices and in the car driving to appointments than we ever care to do again. But they couldn’t find anything wrong with him. His brain functioning was normal. His nervous system was normal. His muscle function was normal.

How did you find out Felix has Tay-Sachs? 

Fast forward a little, and we noticed that he was kind of losing the ability to do certain things. We didn't know at the time, but he had a bad seizure one day, so we took him to the Emergency Room and they confirmed it was a seizure. Then he was admitted to Miller Children’s. The day before they told us, they brought in an ophthalmologist, and he found a cherry-red spot in his eye, which I guess is one of the telltale signs of the disease. So they narrowed it down and we're able to kind of expedite the genetic testing that we had at the lab already before his hospital stay. That night, before we found out, we researched what the cherry-red spot meant. We saw Tay-Sachs on the list, read about it, and prayed it wasn’t that. 

When the doctors confirmed it was Tay-Sachs, we were devastated.

What is Felix’s current prognosis?

Since the diagnosis, we have to keep him on seizure meds, which are good for seizures, but suck because they make him super drowsy. We don’t really get to see his personality anymore. He's just so sleepy all the time. 

We almost wish we could stop giving him the medication because we miss his big personality. But the risks outweigh the benefits — if we take him off, it’s possible he could have a bad enough seizure that he would go brain dead.

What are your goals as a family moving forward after learning about this disease? What do you need right now?

We want to create beautiful memories with Felix. We want to give him the best quality of life that we can with the time that he has. Our biggest focus is to keep him as healthy as possible. 

Felix is going to regress from everything he’s able to do. He's gotten a lot weaker since being on the seizure medications and so as he gets sicker we need more specialty equipment. One of the things we're working on getting him is a medical stroller that doubles as a high chair. It will keep his head where it needs to be and posture supported. 

We have to get a specialty bath chair from him because he can't sit in the bath anymore and what we were doing to support him isn’t working as well. So these accessibility items would be really helpful. 


We want to create beautiful memories with Felix. We want to give him the best quality of life that we can with the time that he has. Our biggest focus is to keep him as healthy as possible. 

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