8 Years Old Tillie Mae Mawdsley fights against Sanfillipo disease as family raises funds for her cure !

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Pic: stalbansreview.co.uk

Jubilee House Care Trust is a charity that helps and supports children and adults with learning difficulties. Warford Business has decided to give a defibrillator to the charity. This charity looks after her niece 8 year old Tillie Mae Mawdsley, who has Sanfillipo disease. Tillie was diagnosed with the rare neurodegenerative disorder when she was only 2 years and it has stopped her from speaking, eating and walking properly.

When Tillie Mae was three years old, she was taken as a clinical trial at the Royal Manchester Children’s Hospital however it was later pulled out by researchers as it did not show enough progress. The family believes that its slowed down the progression of the disease. She is always full of life and she’s in a great place. She is 8 years and still

very much on her feet; she can outrun her mom. Though she has lost a lot of her speech but she can still say Mummy, Daddy and Lexie – her sister’s name.

The family is now raising money to try and secure her a place on a trial in America or France. In the new year, Tillie Mae’s family and fundraising team is planning to hold a Valentine’s ball, a golf day and kid’s talent show.

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