Evening all.

Safe to say the last few months have overtaken our lives.

So much so, I haven’t even had the time to try and get back online with updates. Life really has been putting us through our paces.

We were told beginning of April that we would finally get a referral to a specialist hospital in London! We were absolutely overjoyed and thought this was amazing and that weve waited soooo long for this moment!!

But, we’re now in July and still have no idea about when this will be happening. No one seems to know a thing despite everyone trying to chase it up. 

During this time Mayas been having frequent episodes,  lasting between 1 to 2 minutes at a time. They are much more frequent and her health has been deteriorating, reasons unknown! 

During cluster episodes she has severely bitten the insides of her mouth, ending up with huge swelling and bruising around her face, and causing Trauma to hands from biting.  

Mayas behaviour has been very challenging, followed by more episodes. 

Mayas episodes are getting worse, we’ve reached out to neuro, epilepsy team. 

We’ve rang an ambulance because she was turning blue in the face, we took her to hospital 3 times and we’ve been sent home, with no investigations and as always, feeling like no one gives a damn.
sat waiting for hours in a&e with a child who’s poorly, vulnerable and has complex medical/learning disabilities. 

We are so worried for maya, and just want the best for her. It has been heartbreaking to watch, and know you cannot do anything about it. 

We are hoping and praying that someone will do something soon, because she’s a rare little girl and deserves more! Fingers crossed for us, that next time I post, it will be of some positive news.

Xx