Jade Fund Raiser for Brain Tumour Research

23rd November 2020…

when I woke up that morning I did not realise that within the next 12 hours my world was about to shatter

 

It was the day Kye had his first seizure and it set us on our journey to discover he has a brain tumour in his frontal lobe that causes him to have tonic clonic epileptic seizures in his sleep as well as focal seizures whilst he is awake.

Lucky for us his tumour is stable and we are on a surveillance programme of MRI scans every 6 months to make sure it stays stable and so our biggest battle is with his epilepsy

 

Kye has ADHD and SPD so when we were told he had to have anti seizure medication twice a day we knew we had a challenge on our hands. We tried everything for Kye to take his medication, we cried, we screamed, we bribed and after too many seizures and the doctors advice, we decided the only choice we had was to have a PEG fitted.

Kye has had 2 operations to have a PEG (tube) inserted into his stomach so we can administer his medication twice a day, now with no stress at all

However since having the tube Kye has decided he no longer wants to eat 3 meals a day, he has lost over a stone in weight and so we need to feed him calorie drinks through his tube instead of food.. apart from

chips, he will still eat chips!

 

We have spent weeks in hospital following clusters of seizures, we have had ambulances to our house more times than I can remember.

Hospital trips, cannulas, blood tests, MRI scans, being trained to administer Buccolam, and change his

Mic-Key button have all become the new norm for us.

 

I wish I could say everyone had been amazing and supported us through this time but that’s not my truth, We have our people, you know who you are and I wouldn’t have got this far without you

You mention brain tumours and people shy away from you, it’s too sad, it takes over your life and so people stop texting and calling, they don’t come to visit, they ask other people to send their love.

 

But the hardest part is wanting to do something, to take this all away from Kye, to swap places, it’s the feeling of helplessness that eats you up.

So I decided to do the the Cancer Research London Winter run on 13th February 2022 and try and raise just a little bit of money towards this seriously underfunded charity and also to try selfishly to make myself feel like I am doing something.

It’s hard to share your dark side when you live in a world of only showing the shiny side of life on social media however here I am showing you it all in the hope to raise some money and to try and make a difference… whatever you donate we are truly thankful ❤️