A Letter From Tatyana Malave Ortiz, Aryana’s Mom
by Tatyana, Ohio, United States in support of the Cure GM1 Foundation
Hello,
My name is Tatyana.
You know how everyone says that 2020 was the worst year of their lives? Start of Covid, being stuck inside, not being able to do much. Well, I can’t quite say that it was the worst year because Santiago was born, but, hear me out.
March 27, 2020 – Aryana’s 9 month well check-up. This is when we were going to express our concerns for a bump that we noticed on Aryana’s back. However, thanks to Covid, this appointment was canceled.
July 7, 2020- We went to Aryana’s 12 month check-up, where the pediatrician saw said bump and urged us to go to the emergency room. Long story short, we ended up being sent to the main campus so we could see the specialists. They ran a bunch of tests, and 2 weeks later we received a call from the geneticist asking us to sit down.
July 21, 2020- worst day of our lives. This is when we found out that our time with our daughter was limited. This is when I heard any parents worst nightmare. I would outlive my child. Aryana was diagnosed with GM1 Gangliosidosis a genetic disorder that destroys nerve cells in the body especially in the brain and spinal cord.
Cure? There isn’t one. Treatment? None.
As the disease progresses, children lose abilities that they once had. This damage is irreversible. We immediately enrolled Aryana into physical, occupational, and speech therapy. She was doing great until she became sick in November. A simple cold caused Aryana to lose several of her abilities, crawling, pulling up to knees, etc. She could still sit at that time, but now she has troubles keeping her balance. We noticed issues when it came to Aryana’s ability to gain weight, no matter how much she ate. She also started having issues swallowing liquids. We got a swallow study done and realized that our baby was aspirating, her liquids were going into her airways instead of her stomach. We had to make the decision to go under surgery for a g-tube on March 9, 2021.
March 17, 2021 – We ended up going back to the hospital for breathing issues. They kept us there a week. She now has to sleep with oxygen and we need to monitor her levels if we ever notice her working a little harder to breathe.
March 26, 2021 – Back at the hospital- this time for seizures. They did an EEG for 24 hours and no seizure activity was found in that time. But guess what happened as soon as they took it off? You guessed it, she had another one.
Our baby can’t catch a break. It’s so sad to see her going through all of this and not being able to do anything about it. Not being able to do anything but advocate to help find a cure, a treatment, something to help kids diagnosed with this terrible disease, because as you can see, it can progress rather quickly. In the blink of an eye.
There are no guarantees for Aryana or any other child suffering from GM1 and GM1 is a fatal and terminal disease.
Our deepest thanks and words simply fail to express how incredibly grateful we are.
Thank you,
Tatyana, Daniel, Santiago, and Aryana
ADDITIONAL DONATION INFORMATION
Donate to Cure GM1 here. Donations are also accepted via check, the PayPal Giving Fund which does not charge any transaction fees.
To mail the Cure GM1 Foundation a check, please make the check out to Cure GM1 Foundation and mail it here:
Cure GM1 Foundation, PO Box 6890, Albany, CA 94706
For more detailed information, please see this information page.
Our Family Thanks You for your Kind Support!
