My name is Becky I am the mum of a baby named Oliver who has Prader Willi Syndrome.
We live on the Wirral and have a full house already; a Mum, Dad, Baby Oliver, Roo (Pug X Bulldog X chihuahua), Norton and Buddy (Large ginger cats)
I’m writing this blog as updates for friends and family. If newly diagnosed families stumble across it then welcome or even just new mums as some posts will apply to them! Stick around and have a read, hopefully it will put your mind at ease. For those families that are further along the journey than we are that find their way to us as well, any comments or advice is very much welcomed!
We’re about to embark on a different journey to other parents…or that’s what we thought. It would appear from all the different parents I talk to that every child’s journey is different regardless of whether they have a syndrome or not. We know that not everyone will have the hospital appointments and the different teams of people to support them, so maybe we’re the lucky ones?!
We know that there is no cure for what Oliver has but we also know that there are so many other families out there that are managing their child’s symptoms and using their tips and what has and hasn’t worked for them will help shape how we move forward.
In the six weeks that we had Oliver, Mike and I learned so much about ourselves as a couple. More than anything that when everything isn’t running to plan that we’re both each others rocks, how to pick the other one up and dust them down and finally you cannot foresee everything, so no amount of planning can prepare you for what life wants to throw at you so you need to just work with it and not fight against it.