Your friends are fundraising. Don't miss out, opt in.

120 %
£962.00
raised of £800 target
by 60 supporters
Donate
Layla Benning avatar
Layla Benning

Layla's page

I am running the london marathon on 28th April for The Maddi Foundation because I came across Maddi’s story and felt i could help!

120 %
£962.00
raised of £800 target
by 60 supporters
Donate
  • Event: London Marathon 2019, 28 Apr 2019

The Maddi Foundation

We raise funds for SPG15 medical research to find a cure for this rare disease

Charity Registration No. 1174374

Story

Thanks for taking the time to visit my page....

I am fundraising to help Maddi who is 17 years old. She was diagnosed over 2 years ago with SPG15 (Hereditary Spastic Paraplegia 15). Its a very rare and life limiting disease and at present Maddi is the only one in the UK with this disease that is known of. 

The disease causes paralysis of the limbs as-well as additional neurological symptoms that can affect the eyes, along with Parkinson's and other brain abnormalities. So far Maddi is still trying to keep up her strength with PT but she can only walk a short distance before exhaustion and pain takes over and her balance has become seriously affected which causes her to fall over. 

A few months after Maddi’s devastating diagnosis the family continually searched for help within the medical profession for a treatment or a cure, but it does not exist right now! 

However, the family were eventually handed a lifeline from a UK Neuroscience group that they could try and create a Gene Therapy for SPG15. Sadly there are no funds available from the NHS to help with this research and basically the clock is ticking with Maddi facing disease degeneration. Money is desperately needed to help cover the remaining costs for this all important research to find a cure, this year alone £40,000 is required to fund the project costs which is ongoing until they find the cure! 

Please join me by supporting The Maddi Foundation to help Maddi and other children suffering from SPG15 Disease during this challenging time. 

Every Penny raised support towards the battle ahead to find a cure! 


Please donate for Maddi to get her the treatment she needs in America! Doing the london marathon is a huge challenge and lifetime achievement for me, whilst running those miles... when I hit the pain and the brick wall where my legs want to stop I will have Maddi on my mind knowing the pain she goes though on a daily basis and can’t control!!! 


Photos

1

Supporters

60
Donate