Another personal update...

Hello everyone, I’m sorry to bother you with another personal update, but many of you are invested in this now and have been asking questions that I was previously unable to answer.

I was well under way writing my latest newsletter when I finally got some answers, so I’ve put that newsletter on hold while I clear my head. This will probably be my last personal update, unless something important comes up.

After three weeks of what I can only describe as hell, Ezra has been diagnosed with a form of epilepsy that I assume is rare because its name is a bunch of letters and numbers. It is a genetic, lifelong condition which will likely cause difficulties in Ezra’s development. It is touch and go whether he will be able to walk. We are going to have a long road ahead which will include ongoing medication, a ketogenic diet, and physio.

Ezra is currently being fed through a tube because he has been losing weight. The hospital is not going to discharge him until he has regained weight and his medication levels are right. We have been told gene therapy is a possible treatment and I would be keen to find out more.

Please be assured, Ezra’s situation is not necessarily as terrifying as it seems. The doctor was reluctant to make any definitive statements because there are many unknowns, but he did say those with a short life expectancy have more severe symptoms than Ezra. A lot will depend on how well my boy responds to treatment, but I remain optimistic. It’s all I can do.

Going forwards, I will likely be Ezra’s full-time carer, but that is not remotely an issue. He’s my boy and I’m there for him every step of the way. This little guy has scared me more than I thought it was possible to be scared, but I’m relieved that after three weeks, we finally have a diagnosis and can focus on fixing him. I will do everything in my power to help him get better.

Thank you all for your well wishes. Knowing there is so much love and support out there for my little boy has been extremely humbling. I will endeavour to get my latest newsletter out as soon as my head has cleared (it only needs about another hour’s work). Ezra is very sleepy and this will give me something to do!

As I said before, I remain positive, and I’m a big believer that collective positive energy can help so any prayers / good vibes will be hugely appreciated. The focus now is on ensuring Ezra responds to treatment and shows some progress, but I believe in him. My boy is made of iron and he is going to get through this.

Thank you so much for bearing with me these past three weeks.

I greatly appreciate your love and support x