A Knutsford mum’s story of Prader Willi Syndrome
Your child being ill is every mother’s nightmare. Kate Wilkinson, a mum from Knutsford shares her story with us and launches the latest of her fundraising exploits.
I’m sure we’d all like to thank Kate – for such an honest account, for educating us about Prader Willi Syndrome and for ….. well getting her kit off in the name of charity (with some behind the scenes pictures from the photo shoot)!
When I fell pregnant with Jimmy I was overwhelmed and so excited.
We fell pregnant very quickly (a month after we got married) but straight away I was not myself – tired, grey and to top it all sick.
Most people said this was normal so I just got on with it and carried on to the best of my ability. As the months past I kept getting comments on how small my bump was, which I didn’t really know how to take – was it a compliment? Or was I being a worried mother?
All my scans were fine and all seemed to be going well – apart from me feeling so unwell.
At 32 weeks I went for a check up. I broke down. I knew something wasn’t right. I had hardly felt the baby move, my bump was so small and I was also feeling so unwell. My mid wife, Phillipa, sent me straight to hospital.
Once I got there I was monitored and scanned. It was only then they agreed something wasn’t right. I was far too small for my gestation and the fact I hadn’t felt the baby move was very worrying.
I was admitted to hospital so the doctors could monitor me daily. At this point I wasn’t sure what to think. Was the baby going to be ok? Everything under the sun went through my head, which you can imagine was so daunting.
James, my husband, was with me the whole time, trying to stay positive and give me all the support I needed. He did this so well as I know it can’t have been easy for him to see his wife in hospital.
At 37 weeks I had an elected Caesarean section. Jimmy Wilks was born at 9.31am. It was the best moment.
At first everything seemed to be ok. He was a little on the small side – 4lb13oz – but all things considered that was a good weight. James then fainted, so it was just me and Jimmy having a cuddle whilst daddy was being looked after by the nurses. The world was a good place again.
But once we were back on the ward Jimmy took a turn for the worse and turned blue. He was rushed into special care and put straight into an incubator, which helped with his breathing. Words cannot explain that feeling when he was taken from me.
I didn’t care what that problem was I just wanted to know he would live and be ok.
Jimmy struggled with feeding, so he was fed via a tube which went directly to his stomach. He was very floppy, which is a symptom in babies with Prader Willi Syndrome. Thinking back he was totally lifeless. It broke my heart to see him like this.
After numerous scans, blood tests and other things, he was diagnosed at 2 weeks with a rare genetic disorder called Prader Willi Syndrome – what a relief that was. The paediatrician had mentioned the syndrome to us so we knew a little about it. The main thing was he was going to be ok!
This is where our work began. Not only did we have a brand new bundle of joy, we had a baby who needed us more than most.
James got on to the Prader Willi Syndrome Association (PWSA) straight away, and did an amazing job at finding out as much information as he could and then filling me in on all he thought I should know. For instance, babies with PWS tend not to be able to breast feed which is something I was trying so hard to do. As soon as I heard this information I decided I needed to get him on a bottle, get the feeding tube out and get him home. I managed this in approximately 4 days, which I was amazed at. Finally home.
Jimmy is now two and a half and is doing remarkably well. He started on a growth hormone at the age of 8 months and has reacted really well to the drug. At first it was hard injecting him every night but as a mum it’s just one of those things I had to do, now it’s not an issue he knows it’s part of his bed time routine.
Betty his sister arrived when Jimmy was 17months old. This gave him the extra push he needed. She was so full on which meant he had to get on and fight for attention. Jimmy also started at nursery at this time. It was one of those things that I didn’t want to do but deep down I knew it was going to be good for him, which it was. He fitted straight in and to this day he loves it.
He started walking a few months ago which was a massive achievement – I cried tears of joy for about a week. His speech is coming slowly but I can understand him perfectly already. We have done various signing courses which have helped family and friends to communicate with him.
We receive such amazing support from PWSA we can’t thank them enough, and this takes me to Jimmy’s Bluebelles!
It all started over a bottle or two of wine. I haven’t been able to get involved with running marathons, jumping out of planes and various other activities due to being pregnant, but it was now my turn to get involved in fundraising…..so my lovely sister Livvy suggested we got our kits off for a charity calendar. That was the seeds sown.
The next day I rang around the girls – they were all game but only because it was for Jimmy (or so they said!) We sorted the photographer out and the meetings and shoots started to happen.
It was all done very quickly and was also the biggest giggle we’ve all had in a while. We made a pact that we all had to be fully naked for all shoots, even if it wasn’t necessary. Everyone took it so seriously and got the job done and for this I am very thankful. None of us were particularly nervous as we are all pretty close friends already and we were all in the same boat!
After the final shoot last Christmas we decided on the name. I can’t remember who suggested it but as soon as it was said it stuck, and we all loved it.
We launched the calendar on Friday and the support from all our family and friends was amazing and continues to be amazing. I am totally over whelmed by it all….it hasn’t quite sunk in that we got naked and actually produced a calendar!
I hope one day that Jimmy will be able to look back and say my mummy and all her mad friends did that for me.
To find out more about Prader Willi Syndrome visit pwsa.co.uk
This is not a sponsored blog post.