Archive | June, 2016

Evie’s Everest appeal – help needed

5 Jun

Logo with text

Hello folks,

Remarkably, Wes is starting school in September!  Whilst things are still up in the air around SDR, he’s doing brilliantly and will be joining his big sister at ‘big school’, like any other five-year-old.

Now Wes is doing so well, we wanted to share the story of a special little girl with similar challenges…



Evie Lerner stopped hitting milestones from about 9 months, and had a prolonged period of diagnosis and assessments at hospital and in home by numerous professionals which is still ongoing. Evie has not had a specific diagnosis but her last MRI scan showed an abnormality, a white matter brain condition called hypo-myelination, meaning messages and processing of information are distorted.

Evie’s parents hope to one day understand what has caused this but to date genetic and other tests have not yet found the cause, so we have no prognosis – but we have been told by the paediatrician this is a life long condition and there is no current treatment.  There are – however – a lot of complex therapies and courses of treatment that might help Evie out, many of which aren’t available on the NHS.

So, for anyone who supported Wes through tough times, please do consider lending your help or good wishes to Evie’s appeal, if only by liking her Facebook page, which can be found here:

Thanks a million