Wiltshire family's mission to help child, 9, with rare disease
The family of a nine-year-old girl with a life-limiting illness has launched a mission so she will be able to make special memories with her loved ones.Addy from Swindon, Wiltshire, has a rare type of Batten Disease, a neurodegenerative condition that is often referred to as a form of childhood dementia.Once a bright and bubby toddler, she can no longer walk, can only say a few words and is going blind. Her family wants to raise about £3,600 for an improved buggy that would allow her to visit beaches and other locations with difficult terrains. Her father Dave said Addy shows "love without boundaries" and that the opportunity to share that love with people outside would "bring her alive".
Addy currently has one wheelchair and her parents, who are working with charity New Life to raise the money, have said the new buggy will give her "extra support" as her condition deteriorates. Since her diagnosis at the age of four, her father Dave said adjusting to her needs has "completely changed their lives".Addy's family have "given up jobs, moved house and moved schools" in order to be able to provide her the best support.Dave has also made extensive changes to the family home so that Addy can be "safe, well and enjoy life".
Earlier this year, Addy's family were told she would continue to get access to a drug which she began taking as part of a trial, and is helping to keep her alive.Her mother, Hayley, said the new buggy would allow the family to take the next step of introducing Addy to new environments such as "woodland walks and the beach"."Her [current wheelchair] is brilliant, but it is limiting." [The weight of Addy and her chair] "is just way to heavy to go down to the beach. The wheels would just sink in the sand," she said. She added the family had "wonderful friends" who had already contributed towards the cost of the new equipment.
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