I am Daughter, Familial ALS Family Member, C9 Gene Carrier

ALS does not discriminate against race or gender – We are Latinos. I lost my dad to ALS.

He was kind, genuine, generous, ate healthy, exercised, and did not have any type of addiction. On the surface, to me, that meant that he would live to an old age. Little did we know that he had a gene that would rob me of him a lot sooner than either of us expected.

My world fell apart when we heard the diagnosis. I was his caregiver and I would’ve given my life for his. My biggest fear in life was losing him. He was my everything! People say that things get better with time. It doesn’t. Not when you have what we had. My dad was my best friend and my world. After I lost him, I was alone. In addition to dealing with a major loss, I was dealing with a narcissist mother, and I went through a divorce from a verbally, emotionally and even physically abusive husband who thought that my place was by his side and not by my dying dad’s side.

After my dad passed, his doctor recommended that I get tested for the gene because there was a 50% chance that my dad had passed the ALS C9orf72 gene onto me. I took the test because I knew it would be positive. I thought: “I take after my dad in so many things, why would this be any different?” I look like my dad and I’m like him in so many ways. From him, I have my curly thick hair, my thick eyebrows and the way I smile with my eyes. I’ve been told that my laugh is like his. I have a lead foot like him. I’m adventurous like him. He taught me to help those in need regardless if I know them or not or where they come from. He taught me that life is too short and we never get time back so I should enjoy it as much as possible. He taught me unconditional love.

After he passed, a childhood friend told me that I’m a continuation of my dad on earth. She said that because my dad and I are very similar. We both genuinely care for people. I also got tested because I wanted to positively contribute to the ALS community and knew that I could do so if I understood my gene status.

Initially, I still needed time to process the results even though I fully expected it. Part of me hoped that I would get it so I could be close to him again.

Since testing positive, I’ve been seeing my dad’s doctor for the past 6 years to collect samples (spinal fluid, blood, neurological tests) for research looking for biomarkers. It makes me nervous every time I go in but I also know it’s for the greater good. This is bigger than me! I truly believe that we are the key to finding answers for this horrible disease, finding a cure and stopping the disease before developing symptoms. I don’t want anyone to feel the way I do or go through what my dad went through.

Knowing your gene status is important! It comes with the gift of being able to possibly help a lot of people. It also comes with the curse of being very aware of any change in your body. When that happens to me, I wonder “Is this it?” In spite of that, I don’t regret getting tested and I hope that more Familial ALS families test as well!

For six years, I went through all these experiences by myself because I didn’t have family or anyone to support me. I had reached out to an ALS community for support and felt that my voice wasn’t heard. I went through this experience for 6 years before I found I AM ALS. I asked my doctor if he knew of any ALS community groups that I could join because I wanted to do more for the ALS community than participating in trials for gene carriers. I wanted to advocate, too. I told him about my bad experience with groups and he told me about I AM ALS.

It was refreshing to be able to openly talk to people about ALS and work as a team to make a change in the world. What Brian Wallach and Sandra Abrevaya are doing is unique and powerful. I feel that they have truly given the ALS community a voice and a face. The Familial ALS Community Team with I AM ALS has been especially important for me. It gave me the opportunity to meet other people that know how I feel because they are going through the same in regards to knowing our gene status and using it to help the ALS community as a whole.

I am staying anonymous because I’m afraid of discrimination at my job and that my health insurance will say that I have ALS just because I have the gene and will deny me life insurance. While we still live in this unprotected world, I will continue to work from behind the scenes.

– Daughter, Familial ALS family member, dad’s caregiver, C9 Gene Carrier.