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I am Caroline Anise Gomez

a family member of someone living with ALS | a family member in a familial ALS family | a family member of someone we've lost to ALS

Florida

My mom was one out of five children who all unfortunately carry the fatal gene. That means that my brothers, nieces, nephews, and cousins… all have a 50/50 chance of having the same gene and passing it on.

My ALS Life

ALS has always been part of my DNA, literally. My ALS journey started as early as I can remember being alive. My mom got diagnosed with ALS when I was 3 years old. I remember her having falls at first then slowly losing the ability to move any parts of her body other than her neck. It’s amazing the memories our brain holds on to, even at that young of an age as is the case with trauma. When I was 5 years old I watched while ALS took  my mom’s life from us one body part at a time. She was only 33!

In my 20s my aunt started having similar issues which were misdiagnosed, but the end result was the same fatal disease. It was at that point that we found out that we have familial ALS. I experienced the trauma all over again as an adult. Here I was again watching my aunt who I deeply love slowly become paralyzed on the outside and finally on the inside. ALS took her life away at the age of 47. This time I saw it from a different angle though, feeling not only my pain but also that of my cousins (her two daughters).

Now I’m in my early 40s and watching my other aunt who is in her 70s lose her life to ALS. All three sisters got passed down the TARDBP gene from their father who passed from heart disease before ALS could take over his body. It’s also a possibility that he’s one of the only 10% that carry the gene, but never have symptoms yet continued passing it on to the next generation.

In 2023 I tested for the ALS gene. It has always weighed on me that if I chose to have kids I could pass it on to them. The test result came back positive for the TARDBP gene. My mom was one out of five children who all unfortunately carry the fatal gene. That means that my brothers, nieces, nephews, and cousins… all have a 50/50 chance of having the same gene and passing it on.

If my ALS life can help in any way I would like to share my journey.