I’m Samantha and I live with my family in Bedford. We have three kids – a 23-year-old son (fab babysitter), a nine-year-old son and a three-year-old daughter (a midlife crisis me thinks …) and a cat called smudge.
Our son Ethan who is nearly 10 has an undiagnosed neuro-muscular disorder, so is non-verbal, wheelchair bound and has no means of communicating.
As a result he relies on adult care for everything. In the last few years he has been diagnosed with epilepsy which has slowly been taking over every aspect of our day to day to life and not in a good way. Even normal day to day issues can be really challenging – nothing is ever simple. If I could change something it would be that Ethan could be mobile as I feel like that would improve his quality of life.
When Ethan was about nine months I realised things were different and told the health worker and Doctors on numerous occasions before eventually six months later we were referred to GOSH.
I was devastated and blamed myself and my partner at the time for ruining Ethan’s life – safe to say that relationship did not last, however, I have realised that no one is to blame and Ethan can still have a fab life. I have repaired the relationship with Ethan’s dad and we now can work as a unit even if we are no longer together.
The biggest worry about being undiagnosed is the fear – not knowing what comes next. The epilepsy really has us in the grip of fear at the moment, as the seizures get worse and more frequent and the medication does not seem to help.
If we had a diagnosis it would help in that we might know what to expect or what is going on his body as it is a lot of guess work most of the time.
Despite all this, Ethan is the happiest child you could meet and loves everything especially people and swimming. Ethan himself is such a pleasure and so loving; I am thankful for every day we have.
Our biggest accomplishment to date has been potty training. While he wears pads, school are actually trying to have him go pad free every day for a few hours. We are not quite so brave yet at home!
We found out about SWAN UK from Ethan’s school. I am a new member and am currently just watching from the sidelines and reading Facebook posts from other members. I work full time and have other kids that also have all their requirements / clubs / activities etc. (I sigh loudly as I type this!) so it can be tricky but being a member of SWAN UK makes me feel less alone.
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