THE FAMILY of Thornbury toddler Ezzy Hodge, who took her first steps after life-changing surgery, have said they feared it wouldn’t happen after living a “nightmare” trying to recover money from a charity involved in the campaign.

Three-year-old Ezzy, who was diagnosed with cerebral palsy last year, took her first steps unaided less than three weeks after the radical new surgery to rid her of her cerebral palsy, following an incredible public reaction to the Ezzy’s Wish to Walk campaign, which raised £80,000 in only eight months.

But parents Angela and Matt have issued a warning to families in a similar situation after Bristol-based charity they involved with created a “dark shadow” over the campaign.

The Darren Wright Foundation (DWF), based in Bristol, which helps families fundraise with disabled children’s physiotherapy, specialist operations, treatment and purchasing of specialist equipment, offered its help in organising events and promoting the cause.

It also managed the Ezzy’s Wish to Walk Just Giving page, which quickly raised more than £20,000.

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(Ezzy with her parents Angela and Matt, and brother Olly)

But, while everything seemed positive at first, with Ezzy even being invited to open the foundation's new offices in Bristol, Angela grew more and more concerned over their involvement.

She alleges that a number of promises were not met, with a number of events falling through and excuses being given for delays – going so far as to say “they effectively did nothing” for the campaign.

When the time came for the surgery to be paid for, Angela said that she found contacting the charity to be increasingly more difficult, saying she had to repeatedly chase the charity’s then-chairman Scott Wright to get the funds in time.

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(Ezzy and Scott Wright opening the charity's new offices)

Since speaking out on Facebook about the experience with the charity, Angela said she has come across a series of other families who have been through something similar, with late invoice payments and cheques either being sent to incorrect addresses or even bouncing.

She said: “Since we posted about it online, so many people have said this has been the case for a long time.

“It seems really, really strange. Everyone seemed to know about it but no one said anything and I don’t know why.”

Despite the charity having paid for the surgery, Angela claims they still have £1,200 that rightfully belongs to her daughter, adding that the charity still owes thousands to other families.

“I am trying to warn other families” she said. “We have had a fantastic fundraising experience as it goes, everyone has been amazing on every level, so to have a dark shadow over it from the one group you expect to be the champion of your child is so upsetting.

“I can’t sit back knowing the hell we went through and, as a duty of care to other families out there. They need to be warned to stay away.

“When you go to a charity, you think you will go to someone who will help you, not give you complete hassle for the entire time you are with them.

“There is not one positive thing I can possibly say about the Darren Wright Foundation. My experience with them has been a nightmare.

“People ask why we stated with them, and it was simple, because they had the money. You are worried to ruffle any feathers or change anything in case you stop any chance of seeing the money.”

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(Ezzy walking with her cane during a physiotherapy session)

In a statement released yesterday by the charity, it has been announced that Scott Wright has left the foundation, having been removed from the board of trustees “due to a medical intervention”, believed to be related to suffering a stroke earlier in the year.

A spokeswoman for the Charity Commission, who regulate charities across the country, said they are aware of the concerns and complaints raised against the Darren Wright Foundation.

The commission makes trustees aware that co-operation and full and frank disclosure is crucial. A failure to comply could result in regulatory action against the charity.

She said: “We have previously sought clarification from the charity after a concern was raised with us, to which the trustees have yet to provide a satisfactory response. The commission expects a response from the trustees as a matter of urgency.”

A DWF spokesman apologised to the families involved, and said: "We are aware of our shortcomings as a charity and are working hard on resolving this both with changes in administrative processes and staffing.

"We again apologise to all families for adding to the already stressful period in their life's especially with lack of clear communication. With work that is in progress and changes that are planned we are certain that this situation will never happen again.

"A public argument with those concerned is not our wish and want to resolve the matter in a timely manner with as little additional upset to families as possible."

The spokesman said that a number of threats had been made on social media towards members of the foundation, which were described as "unnecessary and detrimental to the resolution of the situation."