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

At the moment, I am living temporarely in Hungary to receive a veery expensive treatment, one I couldn’t receive in The Netherlands unfortunately. I have the neuromuscular disease SMA type 1. With this disease, a gene is missing from my DNA. Because of this, I don’t have sufficient proteins neccessary for moving my muscles. My daddy and mommy heard about this disease when I was seven months old. I received injections to slow down the disease, but what I really needed was a medicine called Zolgensma.

This medicine places the msising piece of DNA back into my cells, so that I am able to learn to move my muscles. It is a very expensive treatment, costing almost 2.2 million euros!

With a lot of help, we finally reached this goal and I received treatment in the beginning of August. The medicine already helps me a lot! I can sit more upright in the pram and I can also move my arms, legs and neck better. For the first time in my life I can lie on my stomach and I love it!

I hope that other Dutch children can receive this treatment soon in our own country. Because although I love the Hungarian scenary, I do miss my family back home!

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