Woman, 29, Discovers Through Genetic Testing She Will One Day Develop ALS: 'Don't Really Think It's Hit Me Yet' (Exclusive)

Lee Wilson discovered she has a "100%" chance of developing ALS, after losing her father and grandmother to the disease

• Twenty years ago, Lee Wilson's grandmother died of ALS

• After her father was diagnosed earlier this year, Wilson decided to get herself tested for the gene, too

• The 29-year-old was told by doctors she has a 100% chance of having ALS someday, too; now, she is documenting both her new reality and her ongoing fertility journey online

At just 29 years old, Lee Wilson is already aware she will one day develop ALS — just like her father and grandmother did.

Her paternal grandmother died from the neurodegenerative disease 20 years ago in 2004, and her father was also diagnosed in May of this year.

It’s been a decade since the Ice Bucket Challenge dominated social media feeds, and while the project to raise funds for research for amyotrophic lateral sclerosis isn’t as viral anymore, ALS is still a reality for an estimated one in 400 people.

Related: Young Father Defying the Odds of His ALS Diagnosis Says the Disease Is 'No Longer Hopeless'

“We were [initially] told that ALS wasn't hereditary, so we never really worried about ALS,” Wilson tells PEOPLE, recounting the conversations had after her grandmother’s diagnosis. But after learning of her father’s prognosis, she decided to seek genetic testing.

ALS, also known as Lou Gehrig's Disease, targets motor neurons in the brain and spinal cord, resulting in the deterioration of motor function. Most people with ALS will eventually develop partial or total paralysis, and at this time there is no cure for the disease. According to the Mayo Clinic, about half of those with the neurodegenerative disease will die from complications within 18 months of diagnosis.

Before her father’s diagnosis, Wilson and her husband were trying to grow their family, which is what prompted her to begin posting on TikTok. After experiencing two miscarriages prior to the onset of her father’s first ALS symptoms, she began sharing her struggles online to find a community of others who were trying to conceive.

When she and her husband began to speculate that she may carry the gene for ALS, though, they halted their plans as they pursued genetic testing. Wilson left her followers with a vague update, informing her audience that the couple was pausing their journey while she took care of her father as his health continued to deteriorate (he had cancer, as well). But they were also waiting for her results.

“I got the call from the doctor's office the day after my dad died, saying that I had the gene,” Wilson shares. After a consult with a genetic counselor, her doctor confirmed she had a repeat expansion of the gene mutation for ALS, and “my chances of having it were 100% at that point.”

Related: Aaron Lazar Says He Won't 'Fight' ALS After His Diagnosis: 'There's Nothing to Beat'

“I don't really think it's hit me yet, to be honest,” Wilson admits. “I think I'm still in a state of shock.”

According to the ALS Therapy Development Institute, only about 15% of all ALS diagnoses are hereditary, but those who have the gene have a 50% chance of passing it on to their children.

In mid-August, after learning of her prognosis, 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 conceiving naturally, my husband and I have decided to do IVF so that we can genetically test the embryos before implantation,” she explained to her followers in the August TikTok, noting that their decision to pursue IVF may complicate potential preventative treatments.

Wilson admits she’s not quite sure what her next steps are, though she has an upcoming consult with a neurologist she hopes will bring more answers.

“I've been doing a lot of research,” she says. “That's been something that I think has helped me mentally. It's been sad, but I think it's important to learn more about it, especially if I'm going to be dealing with it personally.”

Reaching her online community might help, too, she adds.

“I feel like the more that people talk about it, the more awareness can be brought to it, and the more the better,” Wilson says. “Obviously there's no cure for it, so I'm just trying to do my part and help bring awareness to it.’