VICTOR, N.Y. (WROC) — Earlier this year, a Victor mother of two and full-time gymnast received news that would change her life: a diagnosis of ALS, also known as Lou Gehrig’s disease.
While coming to terms with this rare condition and the road ahead, Sasha Kourbatova and her family continue to advocate for the supports still needed in the process of treatment.
“To this day, it’s absolutely shocking. I was a gymnast. So, I know every part of my body,” said Kourbatova.
Back in May, Kourbatova learned she had ALS. What started as cramps and muscle spasms would quickly evolve into something more.
“The weakness started. I could no longer bring my baby upstairs and started falling a lot. Finally, I said, ‘I need to go to the doctor,'” said Kourbatova.
The rare neurological disease breaks down nerves cells in the spinal cord and brain and affects control over the arms and legs.
For Kourbatova, and many others with ALS, the condition moves quickly. It affects her ability to carry out daily tasks and look after her two young children, ages two and five.
“You have to figure it out so fast, but at the same time, there’s no time to grieve on what is happening with your body, or what your future is going to look like,” she said.
While there is no cure for the disease, Kourbatova and her family are looking at a long road ahead, including medical treatments out-of-state and the modification of their home to make it more accessible.
As Kourbatova’s fiancé and caregiver Brandon Billett describes, those efforts can take time when time is limited. He also says more discussion is needed surrounding the disease.
“It’s kind of a disease that’s a bit under the radar. The ALS Association has been very helpful, but even their resources are limited about what they can help with in most people diagnosed with this disease. It’s not something that should be looked over,” said Billett.
As Kourbatova continues to work through her diagnosis, she encourages those with relative symptoms not to hesitate.
“If you have symptoms of weakness, twitches, spasms, any of that, don’t just let it go. Get it checked. The sooner, the better,” she said, “From day one, you have to figure out what needs to be done because there’s no time to wait.”
The family has created a GoFundMe to help assist with some of Kourbatova’s needs going forward. Those interested in donating can visit here.