Who is Jayme

Hi, I’m Jayme, a happy-go-lucky 1-year-old toddler (born on 24 May 2019). I’m very curious and I like to know exactly what is going on around me. I can already produce all sorts of sounds and I love to prattle along with mummy and daddy. I love to sing and I am so excited when others join me. I love being outdoors and going out for walks in the woods. All those beautiful trees and birds make me feel very happy I look up at them while lying in my buggy, because I can’t sit up yet.

Actually, there are a lot of things I can’t do yet, like holding my head up straight and moving my legs This is because I have a very serious muscular disease called SMA type 1. My mummy and daddy found out about this when I was 7 months old. When you have SMA, there is something wrong with the DNA that helps you use your muscles. Most little kids with SMA type 1 don’t live beyond the age of 2.

To try and slowdown the disease, I’m now getting injections in my back. These injections are very uncomfortable because I get them without any anesthesia and they are also dangerous because I could get meningitis from them. and they are also dangerous because I could get meningitis from them. These injections will not cure me and I have to have a total of six injections just this year.

Now there is a very special drug, it’s the most expensive drug in the world and it’s called Zolgensma. This drug can produce my DNA and will make it possible for me to learn to roll and sit, just like other babies my age. But then I must have this drug very soon and unfortunately this is not yet possible in The Netherlands.

In order to be able to get this drug, a whole lot of people donated a whole lot of money: 1.9 million euros to be precise!

These funds are enough for the medicine, but unfortunately not for the whole treatment. Because the doctors in The Netherlands refuse to treat me, we might have to go to the USA for treatment, which will cost a lot more.

Will you help us raise the money for this treatment so that I will have a chance to grow up and live longer?

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