Ethan was diagnosed with his genetic disorder in 2012. I remember the day like it was yesterday.
The diagnosis came in a letter. As I read that they had found a change in the gene I immediately wanted to know more.
So I did what we do nowadays and went onto Google!
When I typed in ARX I was expecting a list of signs and symptoms to come up. Something that would describe my child.
I wanted to be able to relate to something that would give me some idea of what the future would hold for Ethan.
I waited for the results to pop up. A couple popped up. One was a coding site which was all genetic codes, I couldn’t understand any of it.
The 2nd one was a page about the genetic disorder but had one paragraph which described the genetic make up.
That was it. There was nothing that gave me anything to relate to.
I was left with hundreds of questions and a date for 2 months time with the geneticist.
I was desperate to have more, to find out if my 2 year old child would ever be able to do anything.
So a year later I decided to start writing and documenting our journey.
I didn’t want others with the same diagnosis to go through what I had.
I had searched and waited for 2 years for some kind of answer to explain Ethans development delay and his seizures, then I received a letter with the answer but no actual answers.
Writing has allowed me to be able to express what we go through, things that help along the way and it gives me an emotional outlet as well.
It has given me so much support and a way to digest the fullness of having a disabled child.
Writing has brought me lots of support from people who are in similar positions.
It has also allowed friendships with those whose children have the same condition as Ethan.
I’m glad I started writing because it’s helped me and others as well.