Isabelle's hope. Living with RETT syndrome

Ever heard of Rett syndrome? Neither had we until our lives were turned upside down when our youngest daughter Isabelle was diagnosed in 2015.
Sister to Maisy & Matilda, beautiful Isabelle was a healthy normal happy baby & everything seemed perfect until just after her 1st birthday when we gradually noticed she stopped saying daddy & playing with her toys; instead she was just tapping her hands & wringing her fingers. She became unsociable, wanting to be alone & cried if I tried to talk to her.
I hoped it was just a stage & that it would be ok but something was very wrong. It took 8 mths of back & forth to the doctors pushing to see a consultant. Every day the worry & frustration grew until we saw the paediatrician who diagnosed Rett syndrome. I had no idea what it was, until we read up on Google! Our hearts broke in an instant: what was happening to our perfect baby? We are grieving the loss of the child we won't have; all dreams & aspirations are gone.
Rett syndrome is a very rare severe mental & physical disability. It's a random fault in the genes, nothing causes it & it's not hereditary. It affects 1:10000 girls who develop normally for the first 12-18 months of their lives, learning to walk & talk as any other baby would, then out of the blue Rett syndrome strikes & takes it all away.
Girls are robbed of their ability to speak, walk or use their hands, stuck in broken bodies. They may also suffer seizures, epilepsy, breathing problems or scoliosis.
It truly is the most horrendous & devastating news any parents could hear but Isabelle is still a very happy baby, who laughs all the time. She is our inspiration, our love, our drive.
We can't give up, Isabelle & all the other girls need us to be strong & find a cure for them & we are desperate to give her the life she deserves.

THERE ARE LOTS OF RESOURCES & THERAPIES THAT WOULD MAKE A HUGE DIFFERENCE TO ISABELLE THAT WE WANT TO HELP TOWARDS.