Excitingly or rather foolishly I am running the London Marathon in April! As a fairly new runner (two years including about ten months with a knee injury) this will surely prove to be a challenge but also an opportunity to put off writing my dissertation!   

However I am honoured to be running the London Marathon for
The Lily Foundation in the memory of Jake Hughes. The Lily Foundation has provided invaluable support for my cousin Katie and her husband Nick whose little boy, Jake, was diagnosed with an incredibly rare mitochondrial condition called Alpers. In between hospital stays Jake remained the same happy little boy who loved to play football. Tragically Jake passed away on 28^th May 2016 aged two and a half.

Below Katie explains how the Lily Foundation helped them:

“When we received Jake’s devastating diagnosis we felt totally alone; neither Nick or I had ever heard of Alpers or mitochondrial disease.

Great Ormond Street put us in contact with the Lily Foundation who were a valuable source of information. Lily helped our understanding of Jake’s illness and his symptoms, but also provided support for the immediate grief we felt over his diagnosis.

We were invited to join the Lily parent support group which put us in contact with other families walking the same horrendous path and we felt much less isolated. We used forums to share medical information and advice, but sometimes also just to talk openly about the bitterness of our situation with others who truly understood. Although there was nothing we could do to change the outcome, it gave us comfort to know we were supported by others.

In addition to this, Lily funding paid for us to have a weekend in Woburn Center Parcs with Jake and his grandparents. These are now precious memories of a wonderful weekend we now hold close.

Research and funding done by the Lily Foundation is the reason Jake’s condition was diagnosed so quickly, and continues to help other  families get a faster diagnosis which could previously it could take years.

Lily are the reason we were able to have subsequent pregnancies tested for the gene fault we carry. We have a 1 in 4 chance of a child having Alpers, so without this genetic screening we would not have been able to check the health of our daughter Neri and current pregnancy. Although life will never be complete without our beautiful Jake, the Lily Foundation has given us back a family future we can look forward to.”

I want to help the Lily Foundation support children, like Jake, and their families. All donations large and small are greatly welcomed. Thank you.