AnnaLovisa is 14 years old and was diagnosed with 'Late Juvenile' Metachromatic Leukodystrophy (MLD) at 11. It is a very rare, regressive condition (1 in 2,500,000) and life expectancy is 10 to 15 years from symptoms first appearing. There is currently no treatment or cure. Bone marrow transplantation and stem cell transplantation is under investigation to see if it may slow down progression of the disease, however the long-term results of these therapies have been mixed.
Why are we doing this?
AnnaLovisa is confined to a wheel chair most of the time and every day is fighting a losing battle. Simple tasks such as tying shoelaces which she had mastered before this horrible illness took hold are now impossible. While her peers will enjoy the increasing freedom and independence of their teenage years AnnaLovisa must give hers up. Our goal is to try to give her a little bit of that independence back and provide her with a special memory or experience.
How will the money be spent?
While we cannot be too prescriptive as AnnaLovisa's condition will determine the scope of the experience or activity what we can say is that we would like to give her an unforgettable experience such as a day out or being more ambitious possibly an experience swimming with dolphins or a trip to Disney World in Florida. Funds are not released until the fundraising goal is met so while we have set it at £1,000 we would like to go as far beyond that as possible. Every single penny will go directly to AnnaLovisa, we are grateful that this site is unique in that it does not charge a percentage of funds raised.
What if I can't donate?
Of course not everyone is in a position to contribute financially. If that is the case we ask that you consider alternative ways of supporting us, maybe you could share this story on your social networks, like it on Facebook or create a funny video on YouTube to raise awareness and encourage others to contribute. Or maybe you could run your own fundraising activity like baking cakes or maybe you know someone who can print t-shirts or make bracelets that can raise awareness or be sold for fundraising etc.
Every little helps.
We will inform all supporters of what the money goes on and upload photographs of the special day/activity as soon as they are available.
Thank you all for your support and for making a difference in the life of a very special little girl.
Who am I?
I'm Andrew. I'm AnnaLovisa's uncle...well I will be when Therese and I finally tie the knot. To kick this fundraising off I will be running in the Percy Pud 10km race in Sheffield, England on December 1st 2013. I have never done any 'proper' running before and it is going to hurt so if you can make it along to the race to point and laugh at me please do but most importantly of all please donate by pressing the 'Give Now' button somewhere up there.