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Paulsgrove teenager features in McCain TV advert raising awareness of rare incurable condition and sharing importance of family


The trampoline has been used by the family in so many ways, including eating dinner together on it when Maddi’s sister came to visit.
Shelly was introduced to Family Fund by a friend, and was given the equipment as part of the charity’s campaign to provide families with essential items to help their day-to-day lives.
Maddi was diagnosed with Sanfilippo syndrome in August 2015, meaning she will eventually lose the ability to walk, talk, see and hear.
Most children with the condition don’t live past their teenage years, and Maddi is beginning to lose her speech.
Shelly said: ‘As you can imagine, (the diagnosis) turned our life upside down. I do feel like we’re on borrowed time, but she’s doing really well. ....

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