Please Donate to Abria's Making Memories Fund

HI, I'm fundraising for my amazing 15-year-old niece Abria.

I want to help her make memories. As many as I can.

Abria has been fighting a rare degenerative auto-immune disorder since she was 10

It goes by the name of:

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

A neurological disorder that targets the myelin sheaths that protect and insulate nerves throughout the body.

Only a few people have this in the UK and at the moment there is no funding for research, no support and no known cure.
Because of this her bravery mostly goes unseen, as people don't understand.
They often only see her when the treatment is keeping her buoyant when she can be out and is able to be at school
They think she's okay, on the mend, or there is nothing wrong.
Nobody sees the deterioration & the effects of the relapses. 
The physical and mental toll. The hope of recovery then another relapse, and the side effects of all the different treatment protocols she's had to try. 
It's been a lot for her to handle, but she has.

 

She's been at stage 2, which means each month, she goes into hospital for a few days to receive IVIG, about a 4-5 hour a day session of plasma and meds that keep her body able to fight another month, but leaves her with a minimal immune system.

By the end of each month, she often needs a wheelchair and struggles with losing movement and speech.

 

Stage 2 has been a long  & brutal five years for her.

 

Eventually, it seemed like it could be manageable.

The consultants had found a routine that kept her borderline stable

Until recently

After another relapse, we were told that the treatment she receives each month no longer works for her.

 

The condition has now progressed to stage 3

 

The only treatment option left is intensive Chemotherapy

So far, the only answer to any questions is 'I do not know.'
We don't know if it will work, how it will affect her already compromised system,  or what happens after

 

So that's why I'm here

That's why I've created this Making Memories Fund.
The money will be used to create a Making Memories plan.

I know there is a place she has always wanted to visit, and I want to make that trip a reality for her.

I want to help her make memories. As many as I can.

 

Memories are the only things we ever get to keep.

Memories and the hope of making new ones.

When we lose hope, we lose everything.

 

I want to reignite the power of hope for her and give her something to keep fighting for.

 

Whether you're in the position to donate a pound, ten pound, a hundred or a thousand. 
If you can do anything to help out
A simple share
Anything that will get the word out and help will be beyond appreciated.

 

I'd also appreciate it if you could respect my sister's privacy, unless it's words of support and of love & encouragement, as she needs to keep strong and doesn't have the answers.

I'll share updates as we go 

 

Thank you so so much

All my love as always

Esme

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