Isabelle’s Hope

This is a guest post from local mum Jenny Barnett about the recent diagnosis of her daugher Isabelle. Bingley Mums will be supporting Jenny in any way we can. Please support us.
Ever heard of Rett syndrome? Neither had we until our world was shattered on 23rd September 2015

I have always looked at parents with disabled children with great sadness in my heart and always selfishly I was thankful it wasn’t me, I’m not strong enough to do that …. Well now I have no choice, I have to be strong or our family will crumble. Our lives have been turned upside down but we can’t give up, Isabelle and all the other girls need us to be strong and find a cure for them

Our beautiful Isabelle is our youngest child to two gorgeous big sisters Maisy 5 and Matilda 3

She was a perfectly healthy normal very happy baby and everything seemed perfect.
It was just after her 1st birthday when we gradually noticed she wasn’t saying daddy anymore, she wasn’t playing with toys and instead she was just tapping her hands and wringing her fingers. she became very unsociable. She cried if I tried to talk to her, she just wanted to be alone. What was happening to our perfect baby?
I hoped it was just a stage and that things would be fine, but I was in denial. Something was very Wrong , we had to wait 8 months going back and forth to the doctors pushing to see a consultant. Every day the worry and frustration growing.
It was 2 months after we got married that we saw the paediatrician and she said she thought it was Retts. I had no idea what it was, until we got back to the car and read up on google! Our hearts broke in an instant.
How? Why? What was happening? We are grieving the loss of the child we won’t have, all dreams and aspirations are gone.

Rett syndrome is a very rare severe mental and physical disability. It’s a random fault in the genes, nothing causes it and it’s not hereditary. It affects 1:10000 girls. Girls develop normally for the first 12-18 months of their life’s, many learn to walk and talk and do as any other baby would, everything is perfect. then BAM out of the blue Rett Syndrome strikes and takes it all away. Girls are robbed of their ability to speak, walk or use their hands. They are stuck in broken bodies.

Not only this, nearly all Rett girls have seizures, epilepsy, breathing problems, scoliosis this is to name a few
There is no treatment or cure.

But there is hope. Scientists around the globe are working together to ensure there will be an end to this disease. Retts has already been reversed entirely in a lab rat. The chance of a cure is very very real, we won’t stop till we beat rett syndrome

Isabelle is still a very happy baby, who laughs all the time. I will be breaking down in tears and then just hear her giggle and my heart melts, How can I be sad when she can still be happy. She is an our inspiration, our love, our drive.

So please please share and donate, awareness makes funds and funds create a cure.

Please feel our desperation to give Isabelle the life she deserves, the life she had.
Our silent Angel
Thank you from the Barnetts.
Reverse retts
Rett uk

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