Every day for Evie is like climbing a mountain – the day-to-day activities that most people take for granted have not come easy for Evie. Walking, communicating, and feeding herself are all daily challenges that require our help and support.
In January 2014, at the age of 1 our lives began to change. In the middle of the night, Evie had a seizure, stopped breathing at home and after attempting CPR whilst on the phone to the emergency services, the ambulance came and gave her oxygen, which revived her. That night, Evie turned blue, went floppy in our arms and we thought we had lost her – we hadn’t, but this acts as constant reminder of how precious Evie is to us.
Evie stopped hitting milestones from about 9 months, and had a prolonged period of diagnosis and assessments at hospital and in home by numerous professionals, which is still on-going. Evie has not had a specific diagnosis but her last MRI scan showed an abnormality, a white matter brain condition called hypo-myelination, meaning messages and processing of information are distorted. We hope to one day understand what has caused this but to date genetic and other tests have not yet found the cause, so we have no prognosis – but we have been told by paediatrician this is a life long condition and there is no current treatment.
As a result, Evie has global development delay meaning she is significantly behind other two years olds. Evie has hypo mobility meaning her joints are bendy so she struggles to find any stability. Her cognitive development is delayed and her understanding of the world and ability to communicate are such that she often feels frustrated and upset, unable to express her feelings, wants and wishes.
Despite all of this, every day, Evie shows a desire to move and have close contact with people – she blows kisses, smiles and cuddles and lightens up even the darkest of days.
We can’t begin to understand how difficult that must be for her and we are committed to doing everything we can to help her develop and give her the best possible quality of life we can give.
We have only been going to Snaps for a month or so, but feel it offers such an amazing service to children in need. Private therapy costs a fortune and at SNAPS they provide affordable regular therapy by trained neuro physio professionals.
Dean, Anne and the rest of the team who run SNAPS are so welcoming to newcomers that we already feel SNAPS is a home from home that we can drop into.
But it’s not just about the therapy, SNAPS provides a welcoming place for parents like us to go and speak to other parents who understand what it’s like to have a child with additional needs, and who are going through similar challenges so can share experiences and help each other.
We also take comfort from not having to explain or feel uncomfortable that our daughter can’t walk or talk – as others are in the same boat as us, and can just relax and let Evie enjoy herself with other children.