ellieinfo

Many of you may have heard of Ellenor's struggle to be diagnosed and how hard it is for us, as parents, to accept that
nothing can be done where Ellenor is concerned. It struck home recently when one professional described Ellenors
condition as "what you see is what you get". To us, this was highly unacceptable.

For those who are not familiar with Ellie's story, allow us to recap. Since Belle was 3 months old there has been many
studies to try and understand why, at first, she was failing to thrive. All the time new problems presented themselves -
mainly her gait and low muscle tone. Ellie also has poor vision with photophobia, poor fine motor skills, lower limb
muscle wastage and currently nestles on the 0.02 centile. She is 120cm high and weigh around 2 stones 8 lbs (36lbs).
And whilst she is a happy little soul she does require the use of a stroller and electric wheelchair to assist her on
getting out and about. She is not yet independant - she still requires adult guidancein her life.

In 12 years, according to the NHS, we have "exhausted all avenues". But we will not give up, no matter what the
professionals advise. Our dream is for Belle to walk independently without strollers or chairs, without excruciatingly
painful shoes, understand her underlying problems and have confidence that she can manage on her own should she
wish to leave home. At this stage in her life - none of things are solvable because she has no diagnosis or any form of
support. We hope me might have yours :)