Greetings from Belgium
Je suis Cynthia, je vie en Belgique dans la merveilleuse ville de Gand.
Notre enfant, Samuel, a le syndrome de Prader-Willi. Il a bientôt 5 ans et c’est un petit garçon adorable. Il va a une école normale et jusqu’à présent cela va bien, pas très bien, mais je crois que nous ne pouvons pas nous attendre à plus. La plupart du temps c’est un garçon heureux et il apporte du bonheur dans notre vie.
I’m Cynthia, I live in Belgium in the wonderful city of Gent.
Our child, Samuel, has PWS. He’s almost 5 and a sweet boy. He attends a normal school and until now it goes well, not very well, but I think we can not expect more. Most of the time he’s a happy child and brings joy in our lives.
We didn’t have a very good start with him. When he was born, he was almost immediately diagnosed with PWS but we were never told this until he was 1 year and 3 months old. They did genetic tests shortly after he was born and they came to the result: PWS!! But no one told us that our son had Prader-Willi syndrome.?! Can you believe this!!!
Meanwhile I struggled and “felt” something was wrong but nobody listened to me or believed me. His first months Samuel was very skinny and had a hard time drinking his milk; that was too difficult for him. He didn’t have the strength to drink from a bottle. He was never hungry, we had to force him to drink enough and because he slept so much we had to wake him up every 3 to 4 hours. It really broke my heart, but we didn’t know anything better. I was a wreck and mentally broken.
After quite some months, he finally started eating better. He even became chubby and we were happy, he was eating so well compared to his first months. Because we were still worrying about a lot of things, we went finally (when Sam was 1 year and 3 months old) to an other hospital to an other paediatric doctor. There, we heard for the first time that he was diagnosed Prader-Willi Syndrome.
When he was 1,5 years old we started with a diet and changed our way of living and eating patterns. We got very good tips and tricks by a physiotherapist who came to our house every week. She helped Samuel to move more and started learning to use his muscles the right way. When he was 2 years old he could walk, he made us proud! And ever since he makes us proud every day, because we see him now as a “normal” boy with his strengths and his weaknesses. We are very happy he developed a normal IQ; this could have been differently, we realise that. The only problem at school: he has difficulties with the big group of children in his class and he’s often tired by noon. Now he can choose 1 afternoon in the week he can sleep and this helps.
He will never be a great gymnast, but maybe he’ll love playing a music instrument. We take it day by day.
So, if you are parents of a child with PWS... don’t be sad or worried, God is in control and will take your child through everything that comes on his or her path. They are special!