“Don’t Think You’ve Hit Me Yet” (Special)

Lee Wilson discovered he had a ‘100%’ chance of getting ALS after losing his father and grandmother to the disease

• Twenty years ago Lee Wilson’s grandmother died of ALS

• After his father was diagnosed earlier this year, Wilson decided to get genetic testing himself.

• Doctors told the 29-year-old that there was a 100% chance that he would one day suffer from ALS; she’s now documenting both her new reality and her ongoing fertility journey online

Lee Wilson, who is only 29 years old, is already aware that he will improve one day. with ALS – just like his father and grandmother did.

His paternal grandmother died of neurodegenerative disease 20 years ago in 2004, and his father was also diagnosed in May of this year.

Ten years have passed since the incident Ice Scoop Challenge Social media feeds dominate, and although the project to raise funds for amyotrophic lateral sclerosis research is no longer as viral, ALS is still a reality for an estimated one in 400 people.

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“We were told (initially) that ALS was not hereditary, so we never really worried about ALS,” Wilson told PEOPLE, describing conversations she had after her grandmother’s diagnosis. However, after learning about his father’s illness, he decided to undergo genetic testing.

ALS, also known as Lou Gehrig’s Disease, targets motor neurons in the brain and spinal cord and causes motor functions to deteriorate. Most people with ALS will eventually develop partial or complete paralysis, and there is currently no cure for the disease. according to Mayo ClinicAbout half of those with neurodegenerative disease will die from complications within 18 months of diagnosis.

Before her father’s diagnosis, Wilson and her husband were trying to raise their family, which is what led her to post on TikTok. After suffering two miscarriages before the onset of her father’s first ALS symptoms, she began sharing her struggles online to find a community of others trying to get pregnant.

When she and her husband began speculating that she might carry the ALS gene, they halted their plans by continuing genetic testing. Wilson gave her followers a vague update, stating that the couple was taking a break from their trip while she cared for her father as his health continued to deteriorate (he also had cancer). But they were also waiting for its results.

“The day after my father died, I got a call from the doctor saying I had the gene,” Wilson says. After meeting with a genetic counselor, her doctor confirmed that the ALS gene mutation was on repeat, and “at that point I had a 100% chance of having it.”

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“I don’t think it’s affected me yet, to be honest,” Wilson admits. “I guess I’m still in shock.”

according to ALS Therapy Development InstituteOnly 15 percent of all ALS diagnoses are hereditary, but those who have the gene have a 50 percent chance of passing it on to their children.

In mid-August, after learning about the course of the disease, Wilson posted an update to her followers, informing them of this health update and the next steps in her fertility journey.

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“Instead of trying to get pregnant naturally, my husband and I decided to do in vitro fertilization so we could genetically test the embryos before implantation,” she explained to her followers on an August TikTok, noting that their decision to pursue in vitro fertilization could complicate potential preventive treatments.

Wilson admits he’s not exactly sure what the next step will be, but he’ll be consulting a neurologist soon, which he hopes will bring more answers.

“I do a lot of research,” he says. “That was something that I thought helped me mentally. “It was sad, but I think it’s important to learn more about it, especially if I’m going to deal with it personally.”

He adds that reaching out to his online community can also help.

“I think the more people talk about it, the more awareness can be brought to the issue, and the more the merrier,” Wilson says. ‘Obviously there’s no cure for this, so I’m just trying to do my part and help raise awareness about it.’