Rare cns vasculitis pacns

Never in my wildest dreams would we have ever thought we would be in such a position where we’re looking at humanities kindness for a helping hand but! Here we are and I can only say how much we wish we didn’t need your help, here’s a bite sized brief story about how us and other families have been affected ..

This is Martin, a healthy and happy 23 year old.

On February 14th 2023 Marts life changed forever.

Mart started his day as most of us did, he got up, got ready and headed off to work. Unknown to him and everyone else that would be his last day of normality.

Mart was suffering with a headache that, as any 23 year old would do, ignored it. This was more than just a “headache”, it was in fact his vision being affected that had us insist that a hospital visit was needed!

After 2 wrong heartbreaking diagnoses and 2 brain biologys,spread between February and June (stroke and then incurable brain cancer) we finally had a diagnosis of cns vasculitis.. it was the pacns version of this umbrella term.

It is incredibly rare affecting less than 1 in 1 million, there is little data and of the few cases, martin is the youngest, and so much rarer, Martin was entertained by a number of top neurologists but unfortunately with the lack of data, they had nothing much to go with, as a result martins condition deteriorated rapidly, he was soon placed into an induced coma as he reacted badly to treatments, we had no idea where this was going to end but we knew this wasn’t good.

After 6 weeks in this coma, the doctors told us the brain damage was so severe that without the life support Martin would not survive and that it was time to stop support, this was unimaginably painful.

So support was stopped… Martin absolutely defied the expectations and although was obviously so so poorly, he did in fact pull through! He endured many weeks of pain and discomfort whilst on palliative care! Martin continued to recover but it was becoming more obvious to all that although his body was recovering, the brain damage was obvious.

Moving on, we now have a 25 year old Martin who requires around the clock care, he cannot talk, walk, communicate in any form.. he’s been living in a care home for a while but he is too young for this, he’s coming home soon and we are trying to raise the funds to have an existing en-suite converted into a full wet room so he can shower properly as our local council seems to think it’s okay for him to have bed baths forever, he’s been through enough, I want him to have this and hopefully with your help, we can do this

Anything no matter how small would be very much appreciated to help take the financial strain off us,