My name is Liz-Marie Munaylla. My daughter was totally normal till the age of 10 when suddenly one day she woke up with balance issues, she started to walk on tip toe till the point she couldn't walk no more. I too her to every doctor I could think off but they first thought I was overprotective but 6 month later when she couldn't walk no more and she couldn't barely move her fingers no more they thought she had Hereditary Spastic Paraplegia. We did the testing (which at that time 2011, was super expensive and not covered by insurance). All tests returned negative and everything was normal. Suddenly she couldn't talk anymore. Because we didn't have a diagnosis, we couldn't even get anytype of assistance with Medicaid, which I really needed for Physical Therapy. As a parent I got desperate. I took her to the most important hospitals around the US, and trust me it was quite difficult because as a teacher I do not make much money and worst of all, we didn't get a raise in 5 years. But as a parent you do anything you can. And it is worse when you see your little one deteriorating and getting worse.
I even raised funds to do Stem Cells to help her (in Mexico) and it did, but then she had a fall in the bathroom and broke all her teeth and needed so many surgeries that we lost all the improvement we got from the stem cell. We tried Stem Cell here in the US and it was a waste of money, nothing happened.
Everything just kept getting worse, and we didn't know how it would end. Finally in 2018 they retested her and found out she had a very rare condition called IRF2BPL, which cuts or mutates that gene. By mutating it, it stops making proteins important to the brain so it produces dopamine to make your body move. It gets so bad that kids stop talking, chewing, swallowing and some even breathe. Our kids are trapped in a lifeless body. We even had two kids that died.
We were happy to finally find out what she has, even though there is no cure yet now we have researchers willing to help us. Main problem is that Research is a term for very expensive medical treatment. And because it is such a rare disease right now, we don't get funding anywhere other than what we raise to help with this research. Every week we get more and more children, even grown ups with this.
We found out there is a way to help our kids with something called Cell therapy, which consists in restoring the gene to its original or good way, so it can again do it's function how it should be. The two ladies who found out how to do so, got the Nobel Prize of Science and I contacted them to see if they could help us, because it cost 2-6 million dollars to do so and we don't have that kind of money. You know, sometimes you think that people who received a Nobel Prize maybe would help you, but this was not the case. And raising such an amount of money is impossible.
Finally we found researchers that would help us, but they run out of money and have no where to get funds and everytime you think there is a light at the end of the tunnel, something happens and we are back to ground zero. Right now we have several researchers with promising medications to help them as well as cell therapy but no funds. And this is why I am writing to you, because I started a GoFundMe account but am not successful yet. I need to help to raise funds, because trust me, I am getting older and don't know till when I will be able to lift my daughter and go around. Also, what happens if something happens to me and the worst part was when one day she tried to drown herself in a pool because they became very depressed, remember they know the difference of being normal, because they were not born like that.
If you can help us even with one dollar and sharing the link, it would help tremendously. Thank you so much!!
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Lake Worth, FL