Parents and carers

We invite parents and carers to send in their stories for inclusion in this part of the website. Please contact us.

From Claire S, September 2005:

 I want to reach out to anybody who has recently discovered that a member of their family - whether that be a child, grandchild, niece, nephew, cousin, brother or sister - has Prader-Willi Syndrome.

I was there, 9 months ago! When my son, Tommy, was first born I had an instinctive feeling that something wasn't quite right. He is my second child and I thought, by comparison, that his cry was very peculiar - it sounded like a newborn puppy. He was very sleepy and floppy and his breathing was very shallow. He was also very blue when he was delivered and had undescended testes, but the midwives put this down to a very quick birth (only half an hour). I did, of course, voice my concerns on the maternity ward, and also afterwards to the community midwives, but too often, I think, every mother of a newborn is put in the category of being anxious and over-concerned.

It was only because of Tommy's undescended testes that we returned to hospital and I again voiced my concerns to the doctor, who called the consultant and explained about Tommy's placid nature, sleepiness and feeding difficulties. I think the consultant knew then what was the cause of my concern. He pointed out Tommy's small eyes and mouth and, after some blood tests, myself and my partner were called in to receive Tommy's diagnosis.

Immediately after the words "Prader-Willi syndrome", the words came too slow. I immediately wanted to know if my son was going to die or whether he would be severely disabled - I had never heard of this syndrome and could only think the worst, even in the first few seconds. As soon as I could, I began searching the Internet convinced that, although the consultant was very informative and reassuring, he was keeping some awful truth from me!

When I read some of the characteristics of Prader-Willi, I was devastated, and for weeks afterwards I could read or hear about it again. I was in denial. Every time I looked at my tiny son I cried as though I would never stop. I kept thinking of all the things I thought he would never be able to do.

And then I got in touch with you guys - the Prader-Willi Syndrome Association (UK) - and read the booklet "Our Babies" which is why I am writing to you about my baby!

I realised that Tommy is not just a "Prader-Willi baby". I had been grieving for the child I thought I couldn't have. But now my grieving is over and I can see that he is absolutely wonderful - almost one year old, at the time of writing this. Every single day he makes me so proud and so happy. He is a delightful little boy, who makes everybody who meets him fall in love with him.

He can sit up really well, and has been doing for around four months now. He smiles, giggles, babbles and screams to get attention, just like any child. He may not be as vocally expressive as a one year old could be, but that suits us just fine. He knows how to get exactly what he wants, and sometimes I think he knows more than he lets on. He is becoming a little bit of a rascal now, but all he has to do is flutter his blue eyes at me, his daddy, or anyone else for that matter, and he gets away with anything. He's almost ready for crawling and I can't wait for the games to begin!

You can obtain a free copy of the booklet "Our Babies" (now revised as "Our Babies and Children") by completing our order form.

* * * * *

From Sue W, July 2005:

As I look through the kitchen door watching Callum run about chasing tennis balls with friends, its hard to imagine that 4 years ago I felt thoroughly devastated and alone when the doctor said that he had PWS. Callum had spent the previous 5 weeks in special care, and I had been told that he had 'something' rare and that he would die. Then to be told that he had PWS and that it was not life threatening, I thought at first that it was OK. Then, as I was told more about the condition I felt overwhelmed, and thought it was not OK and that I could not cope. My relationship had broken up with his father, my youngest child was an adult caring for her own child - and at 45yrs I felt that life had dealt me a very raw deal. I found it difficult to explain my feelings about all this, and ashamed that I felt that I did not want my little boy. At 8 weeks old Callum was fit for discharge, and I just wanted to run away, I did not want to bring this little boy home. The night before I was due to pick him up, I finally told staff at the hospital that I could not do it; social workers were called in and arrangements made for Callum to go into foster care.
 
The hospital consultant had contacted the PWSA and spoke with the then Welfare Co-ordinator Caroline, who within a day or two of being contacted came to visit me. This support, alongside speaking to other parents was invaluable, and helped me realise that I needed my son with me, and he needed me to be his mother. Arrangements were then made for him to come home, and he Association again visited on the day he came home, and helped me settle him in; and yes I was still scared and I was still worried. I had this floppy little boy, who never woke up and never cried, but as each day went on he became more responsive and a big part of the family. 
 
Today watching him running in the garden, deliberately crashing his police car into the deck chairs, climbing on his climbing frame and jumping on his trampoline, those early days when all I could focus on in my mind was an obese child in a wheelchair, seem a life time ago. When all I could think about was the syndrome, now it barely enters my head, as Callum is a typical 4 year old. I can hardly believe how quickly the past 4 years have gone. Callum is due to start mainstream school in September, and I have had lots of support, both from health and education, for him to be able to achieve the milestones he has achieved to date.  Callum has given myself and my family so much,and I am so proud of him. 
 

I would also like to take this opportunity to thank the Association for all the help and support it has given us over the past 4 years.

You can read more of Sue's story here

* * * * *

From Pat, August 2005:

Here's a photo history of my daughter, Sarah, who is now 25 years old. At her heaviest she was 23 and a half stone. She now lives in a specialist residential home for people with PWS and has lost a significant amount of weight while there.

* * * * *

From Niru, October 2005:

Just to let you know that our little Yash has been discharged from Speech
and Language Therapy at the age of 2 and a half.

I did this all this by talking to him and singing nursery rhymes ,playing
together with toys.  We also read books together and letting him tell what's
in the pictures and also going through the alphabet. Please can you put this
on the website so parents can have an idea of this.  I'm so pleased with our
little one.