Fight for Aryana
Tax deductible
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.
Help us, help stop our kids from dying. Join us in making a difference.
HOW YOU CAN HELP TODAY
1. PLEASE DONATE what you can, no amount is too small and donations are tax-deductible.
2. Forward this web page to contacts, post in group forums, and to tell anyone you know. Please also share on social media.
3. Leverage any avenue you have to make this go viral.
4. Send leads/tips by e-mail to Tatyana or contact the Cure GM1 Foundation
WHERE IS YOUR MONEY GOING?
Every dollar goes to the Cure GM1 Foundation. Cure GM1 is the only 501(c)(3) dedicated to funding medical research for the devastating neurological disease called GM1 Gangliosidosis. GM1 is always fatal in children. All donations are tax-deductible. 100% of the funds raised here will go toward the research.
Research is extremely expensive. A single small clinical trial costs ~$3-4M.
The Cure GM1 Foundation is partnering with world class GM1 research teams. The Bankiewicz Laboratory at Ohio State is currently developing a next generation gene therapy with direct to brain delivery that requires funding for toxicology, manufacturing, and a clinical trial. This team has considerable experience in gene therapy and neurological diseases with three active clinical trials for other conditions.
Cure GM1 also partners with biotechs and supports projects with respect to drug development for GM1. These projects include support of newborn screening, biomarkers, animal models, patient registries, and research studies to increase the understanding and awareness of GM1.
Funding is needed to move these programs forward. Private funding is required to push projects forward to a point that broader support can be garnered. Sadly, that fight for funding has been left to patient families who are already dealing with this horrific disease, medical bills, and so much more. While there is some hope of promising research and clinical trials, there is still no proven, FDA approved, and treatment available to children suffering of this truly devastating disease.
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!
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.
Help us, help stop our kids from dying. Join us in making a difference.
HOW YOU CAN HELP TODAY
1. PLEASE DONATE what you can, no amount is too small and donations are tax-deductible.
2. Forward this web page to contacts, post in group forums, and to tell anyone you know. Please also share on social media.
3. Leverage any avenue you have to make this go viral.
4. Send leads/tips by e-mail to Tatyana or contact the Cure GM1 Foundation
WHERE IS YOUR MONEY GOING?
Every dollar goes to the Cure GM1 Foundation. Cure GM1 is the only 501(c)(3) dedicated to funding medical research for the devastating neurological disease called GM1 Gangliosidosis. GM1 is always fatal in children. All donations are tax-deductible. 100% of the funds raised here will go toward the research.
Research is extremely expensive. A single small clinical trial costs ~$3-4M.
The Cure GM1 Foundation is partnering with world class GM1 research teams. The Bankiewicz Laboratory at Ohio State is currently developing a next generation gene therapy with direct to brain delivery that requires funding for toxicology, manufacturing, and a clinical trial. This team has considerable experience in gene therapy and neurological diseases with three active clinical trials for other conditions.
Cure GM1 also partners with biotechs and supports projects with respect to drug development for GM1. These projects include support of newborn screening, biomarkers, animal models, patient registries, and research studies to increase the understanding and awareness of GM1.
Funding is needed to move these programs forward. Private funding is required to push projects forward to a point that broader support can be garnered. Sadly, that fight for funding has been left to patient families who are already dealing with this horrific disease, medical bills, and so much more. While there is some hope of promising research and clinical trials, there is still no proven, FDA approved, and treatment available to children suffering of this truly devastating disease.
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!
Organizer
Tatyana Malave
Organizer
Cleveland, OH
Cure GM1 Foundation
Beneficiary