It’s not often we get the opportunity to make a difference to someone’s life and really know about it. I am lucky enough to be in a position to do just that in my latest adventures. On the 11th September I will be doing the infamous London to Brighton bike ride with 23 other people in memory of an amazing little girl called Keira.
Keira’s mum Elizabeth is a friend of mine and one day she turned up at our lace group (we both make handmade bobbin lace) and told us about her daughter suddenly having fits. We all assumed it was going to be epilepsy and so did the doctors but it soon became apparent that little Keira wasn’t suffering with that but something far worse and far more aggressive.
Over the course of a year and a bit she went from being a normal happy little 4 year old to a little girl who struggled with her sight, movement and much more. She stopped going to normal primary school as her needs became more and was in and out of hospital more often than anyone at her age should be.
The disease that she suffered is called Alpers-Huttenlocher Syndrome. Alpers-Huttenlocher syndrome is one of the most severe of a group of conditions called the POLG-related disorders. This Mitochondrial Disease is extremely rare. The prevalence effects approx 1 in 100,000.
People with Alpers-Huttenlocher syndrome can survive from a few months to more than 10 years after the condition first appears. Keira sadly passed away last week after just over a year of fighting this disease. So the charity bike ride we signed up to do is now in memory of her rather than in support of her. Please help and support us.
Whilst Keira has left us her sister Chloe who is almost two is still with us and she has a 50% chance of having the same illness as her sister had.
There is currently NO cure.
The Lily Foundation is committed to finding a cure for Mitochondrial Disease through funding research, raising awareness and family support. This charity has provided tremendous support to Elizabeth, Keira and her family so we have chosen to support them with our charity bike ride to help other parents and children and help to find a cure. Hopefully the funds raised can help find a cure and protect Chloe from the illness that Keira has suffered.
Please donate anything you can either via the JustGiving Page http://www.justgiving.com/KeiraElmer – or Text KEIR61 £1, £2, £3 etc to 70070.