Family Stories - Reece

Family stories from the Myotubular Trust

Family stories from the Myotubular Trust

Family stories from the Myotubular Trust

 

 

Reece was born on 12 May 2006 and when he was delivered he couldn't breathe. After struggling on and off ventilation for the next 3 weeks, the doctors decided to give him a tracheostomy to help his breathing and speed his recovery. We were hoping to nurse him at home, but then Reece had several trips back into intensive care, following several cardiac arrests. Thankfully, he's not been back in ICU since. We were given a diagnosis in February 2007 which came as a shock, although we knew there was something wrong because he's never been home from hospital. But then he started to do much better: clapping his hands, blowing us kisses, and even managing to babble past his tracheostomy!

Reece came home for good july 8th 2007 – and at last we are a family. Reece now has a little brother, Connor who is a healthy boy, although we did have to go through testing early in the pregnancy to check he was not affected by myotubular myopathy like Reece. Thankfully Connor is okay and not affected.

Reece now goes to nursery school 5 mornings a week were he is learning lots of new things: he is using a laptop with a switch to activate games, he is learning lots of sign language and continues surprising us with what he can do. We are all so very proud of where our little boy is today

November 2015

Reece is now 9 and in full time school attending main stream 5 morning a week. He is really excelling in maths and English especially.

Reece has two brothers, Connor(7), Declan (4) and a sister, Darcie (8 months) Reece really enjoys iPad time, bowling, going to the cinema and computer games. He types out for us and uses sign for communication and he has a fantastic sense of humour.

Sadly Reece left us on Saturday 28th May 2016.

Click here to make a donation in memory of Reece


Family stories from the Myotubular Trust