Ipswich community rallies around teen with rare life-limiting condition

Why it matters: Fourteen-year-old William Saul has MPS III A Sanfilippo — a life-limiting condition so rare that only 83 babies were born with it in the UK between 2010 and 2020. As his condition progresses, he will lose his mobility and require a wheelchair. His parents, Sarah and Gareth, are determined he should remain at home with his family, but need to adapt their house to make that possible.

The details: William, who was born in 2011, was diagnosed with autism just before his fourth birthday. Over time, his speech began to disappear and his behaviour became increasingly difficult to manage. In January 2022, his paediatrician recommended genome sequencing to test for any underlying conditions. The results came back on 4 August 2024, when the genetics team at Addenbrooke's Hospital confirmed he had MPS IIIA Sanfilippo — a metabolic disease affecting the brain and spinal cord, caused by a lack of an enzyme that breaks down heparan sulphate. There is no cure or treatment, only symptom management.

William has since lost his speech and is living with childhood dementia, which will continue to decline alongside his physical mobility.

To keep William at home, the family needs to install a through-floor lift, widen doors for a wheelchair, fit tracking for hoists, build a ramp and porch, and add a downstairs wet room. While the family is eligible for a Disabled Facilities Grant of £30,000, this falls well short of what is needed. They launched a crowdfunding page on JustGiving to bridge the gap.

"This is so that William can actually stay with us for the entirety of his life, which is what we want," Sarah said. "We don't want him going anywhere else."

Support from the community: On Saturday, 23 May, The Flying Horse Café & Public House on Waterford Road in Whitehouse held a fun day in aid of William's fundraiser, raising £2,073.38.

Sarah said the response had been "completely overwhelming."

"Everyone was there to support our amazing son William, and seeing so many happy faces was just pure joy," she said. "We are so grateful to everyone who volunteered or helped to make the day so memorable. We would like to give special thanks to Sarah Williams and Sarah Battistetti for making this event happen."

The Flying Horse: The fun day was hosted by The Flying Horse Café & Public House — a community venue that has undergone a remarkable transformation since Sarah and Giulio Battistetti took over the lease in February 2024.

The couple, who initially rented the upstairs to run an afterschool club, relaunched the pub after 18 weeks of refurbishment, turning what had been described as one of Ipswich's most troubled venues into a thriving family hub serving the Whitehouse and Whitton estates.

The day featured archery, a bouncy castle, a disco, face painting and visits from Spiderman, Stitch and Bingo.

The bottom line: With more than £18,800 now raised, the Saul family still has a long way to go to reach their £60,000 target — but the outpouring of support from the Ipswich community has given them hope. You can support William's fundraiser via the family's fundraising page below.

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