Thanks for taking the time to visit my JustGiving page.

This year I will be doing various park runs and fundraising events for MECP2 DUPLICATION UK.

Anyone who knows me knows my fat arse lives on the sofa eating cake, so this will be my marathon.

Not many of you know but in Jan this year Blossom-Rose was diagnosed with xq28 duplication aka MECP2. I hear you asking what is mecp2? Well...

Symptoms of the condition can cause: misshapen skull, low muscle tone, limb spasticity, high reflux, significant developmental delay, intellectual disabilities, limited speech/language, autistic behaviours, recurrent infections (more so respiratory), seizures, low bone density/fractures, developmental regression ( can lose speech and ability to walk at adolescence).

There are only 200 cases diagnosed in the UK and the average life expectancy is 22 years of age 😭.
The condition tends to affect boys more than girls, but Blossom shows more male typical traits of the syndrome.

We need answers, we need support, we ideally need a cure! MECP2 DUPLICATION UK offers support to families like ours who really have nowhere to turn because even the "specialists" just don't know

PLEASE DONATE ANYTHING YOU CAN TO KEEP THIS AMAZING CHARITY GOING