Hello my name is Alessa, I am the best friend to the parents of Ava she has been diagnosed with Sanfilipo syndrome ( MPSIII Sub type A ). There are 1 in 70,000 children worldwide woth sanfilipino syndrome and not many people are aware of this disease and needs lookikg into further. All children woth this awful disease may not live to see her twenties. The funds raised from this go fund me will be spilt in half - half will be donated to the MPS charity which will help towards supporting other children fighting this awful disease and raising vital funds towards research and one day hoepfully finding a cure (there is currently no cure) and the other half will go towards giving ava the best life possible creating memories and having lots of fun and going towards supporting the costs of hospital visits. Ava is currently happy and in the very early stages of sanfilippo syndrome and is classed as stable for now.

There is no known cure at the present time however funds will also be allocated to research also.

At the minute she is a happy healthy four year old and is trying to live her best life before the disease makes her deteroriate, the news has devastated the family as it is an extremely rare disease and requires attention and research.