Today my middle child went to a Paediatric appointment, it’s routine annual check up as he was born with the rare genetic condition Prader-Willi Syndrome.
In the U.K. Approximately 1 in 25,000 children are born with PWS, it’s rare compared to let’s say Down’s syndrome which is 1 in 700 babies. Unlike Down’s, PWS is not genetically picked up during pregnancy genetic testing.
You can read about PWS in the above link, but basically it’s a condition where the person with pws suffers with permanent hunger. They have a risk of obesity, obesity related diseases as well as death. It’s a ducking cruel syndrome. My little boy was diagnosed at 11 weeks of age on the 3rd March 2014, it sent me into a deep depression because I was grieving for my child, I was upset that we hand been dealt the wrong hand and the fact when was I going to get a break? Why did our little boy have it. It was devastating, my heart shattered that day.
During the checkup today I was made aware that my son had gained a lot of weight, he has also started to obsess with food and will take anything that is lying around. He has now also entered into the hunger stage which will be with him for life. I left the hospital feeling absolutely rubbish and the fact he has gained a fair amount of weight, a failure. I had failed him.
It’s so hard managing mental health conditions and a child with special needs, that alone is mentally, physically and emotionally draining. I have no idea what I’m doing or if I’m doing everything right or wrong even. Maybe there isn’t a wrong or right but at the moment I feel deflated and my shoulders are heavy. My heart hurts because I was hoping the hunger bit would come later at an age where he can understand.