Thanks for making it to my Just Giving page.  I'll spare you all the blurb and guff about hard it is to run a Marathon because for me (thankfully) it's not really - just read this and then decide how much to give! Thanks

Maisie's story (Maisie is the little girl on my homepage)

When baby Maisie Johnson was born in August 2009 the moment of joy for her mum and dad turned to tragedy. After a traumatic birth, she was later diagnosed with a host of serious conditions including a developmental disorder, muscle weakness and a blood disorder.

Little Maisie has to be fed through a tube and needs the help of a team of medical experts. Her condition may affect her breathing, speech, walking and coordination for the rest of her life.

But WellChild nurse Rhian has been on hand to support the family and care for Maisie. With her help a long stay on a hospital ward has been avoided and Maisie is now being cared for at home where she belongs with her family around her.

Maisie and her mum and dad Claire and Dai now have the help of physiotherapists, speech therapists, community paediatricians and children’s nurses who help provide care for Maisie at home. She still needs regular trips to the hospital to see neurologists.

Her condition is ongoing and until she develops and meets her milestones, Claire and Dai won’t know the extent of her condition.

Claire is full of praise for the way WellChild Nurse Rhian has helped the family.

“We would have been in hospital a lot longer if Rhian hadn’t stepped in to help. Rhian has been a great support and she always checks on Maisie. I can still call her if I need anything,” said Claire.

Like many parents worried about their children’s health, Claire’s first instinct after Maisie’s diagnosis was to trawl the internet for information.

“The problem was, it gave me only bad news. In the end, I decided to rely on Rhian instead. She tells me what I need to know, and if I’m unsure about advice from doctors, she’ll explain in terms that I can understand. She taught me how to massage Maisie to calm her. At home Maisie’s brothers can help bath and change her. We’ve all decided the best thing we can do is take one step at a time.”