Family overwhelmed by support for fundraiser in Alpheton, near Sudbury, for young girl with rare condition

The family of a young girl with a rare genetic disorder say the support for their recent fund-raiser was ‘truly overwhelming’ and beyond anything they had imagined.

A large crowd braved the sweltering heat at the weekend, as they embarked on a 10-kilometre walk around Alpheton, near Sudbury, in solidarity with 20-month-old Dusty Gunn.

Dusty lives with stage 4 PDH1 deficiency, which causes lactic acid to build up in the body, with various physical and neurological symptoms, such as development delay and muscle weakness.

The condition means that the youngster needs complex, round-the-clock care – including a strict ketogenic diet via a feeding tube, and constant physical therapy.

Now requiring specialist equipment and home adaptations to support her, the family have launched an appeal, in partnership with the Tree of Hope charity, with a long-term goal of raising £30,000.

Dusty’s grandmother Kerry Etherton organised the sponsored walk, which set off from Alpheton Village Hall on Sunday morning, with around 30 people taking part.

Joined by Dusty, her dad Billy, mum Rosie, sister Florrie and brother Billy Jr, the walkers helped to raise more than £6,000.

Kerry told the Suffolk Free Press: “To be perfectly honest, the support we received far exceeded anything we ever expected.

“To think that so many people – not just our close family, but friends from afar, local Suffolk neighbours, and even those who have never met my family – chose to give up their time, offer their support, and make such generous donations. It’s truly overwhelming.

“That they would walk in that extreme heat, just for our Dusty, speaks volumes.

“It was an incredibly emotional day, and there are truly no words that can fully express the depth of our gratitude to each and every one of them.

“One of our neighbours, who is seriously unwell and undergoing dialysis, even made the effort to take part in the walk.

“That gesture alone left us speechless. Sometimes, there just aren’t the right words to say thank you in the way people truly deserve.

“I believe in life, you treat others as they treat you – and, we hope that one day, we’ll be in a position to return the kindness that has been shown to us.”

Kerry added that, going forward, the family are looking for more ways to not only raise more funds, but also spread awareness of PDH1 deficiency.

She hopes to contact Dusty’s siblings’ schools, with ideas such as a sponsored walk in the park, a non-uniform day, or a bake sale.

To donate in aid of Dusty, visit www.justgiving.com/campaign/ dustys-story.

“We’re continuing our efforts to raise funds for Dusty, in the hope of giving her a chance at a more independent life,” said Kerry.

“We're exploring options like getting local supermarkets to display Dusty’s JustGiving page with a QR code people can scan and donate to. One local shop has already agreed to put it up in their café.

“While fund-raising is important as a family, it’s not just about the money – it’s also about raising awareness of PHD1, and helping other parents who might be facing similar challenges to feel less alone.”