Eliza's Story

"The actual day we went in and got Eliza's diagnosis still now will always be the day life as we knew it changed. When we were told, my husband Lee went blank.  He didn't say anything, I asked 1000 questions but he just sat there.

"We went into that room believing something was wrong, but something that could be fixed. We were so wrong.  It took ages to sink in.  I'm a very emotional person but I couldn't cry, it seemed like a joke and someone was going to tell us they had looked at the wrong notes. But to be honest I had known since she was seven months old something was not right.  it just took another five months for it to be confirmed!

"Googling was a minefield.  Nothing seemed to guide us or help or comfort us.  On one of the very few physio appointments we were given I came across three generations of a family sat in the waiting room and when the daughter and mother went in for their appointment I went and talked to the grandmother.  Something inside made me reach out and thank goodness I did. The mother Elena, had a daughter India who attended Dame Vera Lynn Children's Charity.  I told her I felt lost and she said to ring the Charity as it had helped her so much.  I called as soon as I left the physio appointment.

"We were invited for an assessment.  I was so scared that Eliza would not seem 'bad enough' to be helped.  The relief I felt when they told me she could attend was enormous.  I can hand on heart say that if we have not attended the Charity I think I would have had a breakdown as I just couldn't process what had happened.  My husband and I who have an amazing bond and communicate really well just couldn't discuss it.  It felt like if we did it would mean it was actually happening, this thing we couldn't fix.

"Dame Vera Lynn Children's Charity saved us. It gave me the comfort of not feeling alone, armed with knowledge and helped me understand it wasn't my fault and life does go on.  The team are amazing.  They see the beauty of the children and Eliza has become so much more independent and it has helped her meet other children just like her.  If it is the only thing you do, call Dame Vera Lynn Children's Charity, they will change your life around!"

Stacey Jones

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