This truly is an amazing gift that will go with Evie-Anne everywhere she goes, thank you so very much to everyone involved, we are so grateful, it's simply beautiful xxx
My daughter Evie-Anne has a life limiting chromosome adnormality
called 1p36 deletion syndrome, there are approx 31 children within the
U.K and Ireland with this syndrome. Evie-Anne is 3 years old this November, it is a miracle she has made it this far!
Evie-Anne has very low muscle tone, it is unlikely she will ever walk
or talk, she is fed by gastrostomy directly into her tummy as she has
a very poor swallow and weak, damaged lungs caused from reflux it is
unlikely she will ever eat by mouth.
Evie-Anne also has uncontrollable
epilepsy, disturbed sleep apnea and night terrors, short bowel syndrome, and many other medical issues and health problems.
Evie-Anne is registered blind, constant diagnostic testing every 6 months show no sight, but we definately feel that Evie-Anne sees very
bright and UV lighting, she responds amazing when we visit the sensory
room every time she is in Birmingham Childrens hospital.
Evie-Anne loves to feel, she loves blankets, we keep buying them for
her, I fell in love with your love quilts as Evie-Anne is in hospital
so much that it will hopefully be a piece of "home" she can take
everywhere with her!
I am a full time carer for Evie-Anne and my 18 year old autistic son.