Experience stories

I am Daya and I have CdLS

Super proud of where I have comeI am three years old and a sweet, cute, but definitely a headstrong girl. I am small for my age and have a developmental delay but that doesn't stop me from wanting to know and learn everything. I often don't do it fast enough and then I get very angry. But when I do succeed, I shine like the sun and am very proud. I love music and dancing. Everything has a rhythm for me. I also like structure very much. Then I am at my best. I recently went to the special children's day care centre "de iemenkorf" and I feel good there. I love other children and am very kind to the smallest ones. My sister Madée is very sweet to me. And mum and dad are very proud that I have got where I am today. They call me their little go-getter! 

Sweet greetings from Daya

Since early April we know that Daya has CdLS. In a light form and that is why it took 3 years to find out. Daya could not drink herself and therefore she lost a lot of weight after birth. She was already small and light. The doctors kept saying that she was behaving prematurely. After three weeks in hospital Daya was allowed to go home with a tube. The tube was needed for four months. Then she started to eat and drink on her own. It wasn't easy, but it was enough. Daya remained too small and too light and developed very slowly. 

Beautiful young lady...The doctors saw that there was something wrong, but it was a mystery what. A chromosome test was done, but nothing came out of it. After 3 years of paediatrician, logo, pedagogue, physio and early help we insisted on another visit to the clinical geneticist. He had a suspicion when he saw Daya, but the results were still awaited for 8 months. And there was the confirmation: CdLS. Daya herself is not different, but for us a lot fell into place. 

So much recognition! 

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Nicole van Zoelen
Nicole van Zoelen

We want to thank Nicole for sharing this story.

Page history
Last modified by Gerritjan Koekkoek on 2021/11/11 16:14
Created by Gerritjan Koekkoek on 2021/11/11 16:05



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