Written by Amy Gowman-Dunn – mum to George
Hi, I’m mum to George aged 18 months, he was born premature with multiple complex needs and was then diagnosed very early with two genetic conditions. One of these was PWS which until this moment I had never heard of before. In these first months of his life it was a blur and everything was so overwhelming, having to learn lots about PWS and care for a very floppy quiet baby with feeding issues, not holding his head up till 10 months and just sitting up for his 1st birthday.
I now value every tiny thing that he does that is new and we learnt very quickly to celebrate the small wins in his life. George was my third child and what I thought would be an easy one was anything but that. Having George has changed us in so many ways and made us into better parents and a stronger family, he has two big brothers that love him to pieces and are so gentle and loving with him, they have helped with his development in ways I never thought possible and all three boys are so close.
As parents you move mountains to help your children achieve the best possible life they can, and for George I feel we may have to move many mountains but that may be a slow process, but that gives us more reason to fight. Every day he surprises us in something that he does and he has an amazing sparkle in his eye.
Move it May Challenge
So this May I have taken up the challenge of Move it May and to walk 120 miles, something that I knew would be a big ask on myself as being a mum and wife along with working part time, George still has weekly appointment and by the time dinner Is done I’m shattered. But while I write this at the end of my first week I have walked 36 miles in a very busy week, not only has the weather been windy and rainy for most of it I have been fighting a cold. I’m pleased that I have pushed myself everyday to go out with George and walk, my legs have felt like jelly at times and ached everyday. You can support me in my challenge by clicking the JustGiving button below.
Research and Covid
As we all know the last year with COVID has been a struggle for us all but the FPWR UK haven’t be able to do any fundraising, so that means that no donations have been coming in and that I’m sure is completely devastating for a charity like this. For me it May only be a small part but helping to raise money for the FPWR UK is something I feel very passionate about. Research is vital for our children’s future and the children that are yet to enter the world with this diagnosis, I truly can’t even imagine how anyone feels living with this, but being a mum to the most amazing cheeky happy little boy that has so many battles to face and challenges to overcome on an daily basis, I can’t even count the number of doctors, consultants and specialists in his life and he isn’t even two years old yet.
The Future for PWS
We all maybe on different journeys with the loved ones in our life’s that have PWS, a brighter future is the same wish for us all. I would like to thank all of you that read this blog as without parents, grandparents, family and healthcare professionals I’m not sure I would be the mother I am today, we really are one big PWS family. I am a big believer in knowledge is key. So let’s keep fighting and educating the world and keep supporting and raising money for research because I really believe the future is bright for the PWS community. One day there will hopefully be big advances in treatment for PWS and until that time we can all do our part to do what we can to help.
I would like to give a massive hug to all those raising money for Move it May, which ever way you can, and bring a big cheer to you all. Keep doing what you can, this is a huge boost to raising money for a very special cause …… keep safe everyone.