Just4Children are fundraising to allow Emily to access the therapies she loves and the equipment and medical care she needs.
Emily is aged 18 months from Milton Keynes. After an easy and normal pregnancy, Emily was born on her due date in 2021.
Straight away, we knew something was up.
Emily found feeding extraordinarily difficult and was becoming exhausted by the attempt. At 5 weeks, she missed her first milestone and didn’t smile. At 3 months, she had an MRI which showed very significant structural changes in her brain. From there, Emily was diagnosed with Septo-Optic Dysplasia, Schizencephaly on one side and – most seriously, Vici Syndrome – an ultra-rare and life limiting genetic disorder.
Our beautiful girl is blind, tube fed and unable to walk or talk.
However, Emily is also calm and content, even serene. She is very communicative once you learn her cues and responds enthusiastically to all kinds of therapies and inputs. She smiles sometimes, especially when she hears her big sister’s voice or when she’s playing with her favourite switch toys. And, she moves too, arms, legs and, when she’s in a hugely determined mood (most of the time) she’ll give sitting a good go as well.
This campaign aims to raise the funds for Emily to access the therapies she loves and which support her development. In particular, Emily has regular hippotherapy and play therapy, as well as respiratory physiotherapy to help us to protect her lungs.
We also hope to raise funds for Just4Children so that Emily can have the specialist equipment she needs to navigate her world, hoists, bathing equipment, switch toys and much besides.
We want her to have the very best life possible!