Thanks for taking the time to visit my JustGiving page.

Despite having a baby 6 months ago, I am taking on the challenge to run the London Marathon again. I know it will be tough trying to train with a baby, but my drive and determination will be the bravest and strongest baby I know, our cousin Pearse. 

This is his story from his Wonderful Mummy Laura

“Pearse was born on 14th December 2021 and until 25th October 2022 he has only spent 4 weeks at home.  He spent most of his first year of life in ICU care at hospital.  Pearse has a lot of issues with breathing and feeding independently.  He was also very vulnerable to illness and seemed to go from one virus and infection to another.  On countless occasions there would be so many wires and tubes attached to Pearse, having a cuddle was just too difficult and scary,, all we could do was hold his hand and pray by his cot!  

At barely two months old it was indicated that Pearse may have a congenital myopathy and that it was possibly a rare condition called XLMTM. But, he didn’t receive his proper diagnosis until he was 10 months old!!

Pearse prognosis at 2-3 months old was not good and he was to be sent home as end of life care.  As his parents we were desperately trying to find some sort of hope, and then we found the Myotubular Trust and support group.  Throughout all of Pearse’s difficulties over the last year, this charity and all of its members have been an amazing support to us.  It was only through them that we found the information we needed to help Pearse.  

Pearse has survived and thrived because of them!  Yes his life is complex and he has medical needs, but he is a very happy, playful and funny little boy.  We love him for who he is.  

The Myotubular Trust is a UK based charity, every penny raised goes towards research to try and help children like Pearse.  XLMTM is just one variant of congenital centronuculear myopathies.  These children have a high mortality rate and are born with everything against them…except if you have hope!!!

We hope to “Find a cure…strength together…to support the Myotubular Trust”

Laura (Pearse’s very proud mama) x”

We appreciate your support and kind donations