‘It’s amazing’ Children’s charity needs your help more than ever
WHEN little Arthur Spackman went on a Wish Holiday to Paris Disneyland it was a dream come true for his family.
But Gloucestershire’s leading children’s charity gave Arthur and his family so much more than treasured memories of meeting Minnie Mouse during the Eurodisney VIP trip.
Because without The Pied Piper Appeal, Arthur’s short life and the lives of thousands of other Gloucestershire children would have been all the poorer.
Practically all the 6,500 young patients who pass through the doors of Gloucester Royal Infirmary benefit from the charity, which was founded in 1992 to fund the Children’s Centre that eventually opened in 2004.
Regular visitors like Arthur, his parents Charlene and Ashley and sister Ellie, now seven, know full well the difference it makes.
Despite the two-year-old’s complex needs, Pied Piper managed to arrange their first and last trip of a lifetime shortly before he died in his dad’s arms in the early hours of May 2, 2019.
“It was a dream come true,” said mum Charlene, from Brockworth, who said Arthur loved meeting Minnie Mouse. “It was our first family holiday together and the amount of happy tears me and Ashley cried was crazy. For my daughter, the biggest memories she has of her little brother are in Paris Disneyland.
“Arthur passed away within a month of getting home, so it is the last big thing we shared together, and we have so many family photos and funny stories because that holiday was so amazing.”
Arthur had a rare genetic disorder called nonketotic hyperglycinemia, or NKH, which left him severely disabled from birth and needing round-theclock care. The family were regular visitors to the Children’s’ Centre, where the charity supplies equipment such as heart scanners and invests in training so that paediatric nurses are up to date with the latest information and skills needed to treat young patients.
“It is an amazing place because it so child-focused,” said Charlene, 33.
“Pied Piper supplied a lot of the medical equipment my Arthur used, but so often it was the little things that made such a big difference to us: the nice cubicle curtains so we could have some privacy, the TVS on the ward so we didn’t have to go to a TV room, and the playroom stocked toys so Ellie could play when he had to stay in overnight.
“There are loads of families like ours with children with life-limiting conditions who know what a difference it makes, but I don’t think most people realise the amazing things Pied Piper do to help everyone in Gloucestershire who takes a child into hospital.”
Charlene is telling people her story because the Gloucestershire charity has not been able to hold any fundraising events during the pandemic and urgently needs financial help to plug a shortfall of up to £135,000.
Over the years, Pied Piper has raised £4 million towards its mission to make a difference to the lives of sick and disabled children in the county.
It mainly does this by funding the Children’s Centre at Gloucestershire Royal Hospital, supporting all special educational needs schools in the county, sending children with lifelimiting conditions on holidays with their families and improving their experiences of mental health facilities in the county.
Recent work has included refurbishing family rooms, the sensory bathroom and hearing equipment at the hospital.
It has also supplied over 12 minibuses to SEND schools and recently agreed to work with St Rose’s School,
Music Works, Goals beyond Grass and the Ridge academy in Cheltenham.
It believes the Wish Holidays will be more important than ever next year but fears the fallout from the pandemic will push up travel costs, affecting the type and number of holidays it will be able to sign off in the future.
Fundraisers are hosting virtual events such as a raffle, colouring competition, Christmas jumper day and Santa Fun Run, when people will be urged to dress up and run around their neighbourhood to raise money.
“We have not been able to have any of our events, which would have amounted to approximately £100,000 to £135,000,” said Nick Broady, chairman of the appeal.
“Going forward into next year, it will be a challenging time to maintain projects, so we are doing as many fundraising opportunities as possible virtually over December.
“If we weren’t here, the impact would be huge. For instance, if we did not supply the large pieces of medical equipment, such as the heart scanner and blood machine, families would have to travel to Bristol for these procedures, possibly with other children, causing distress for the sick child and the family.
“Pied Piper are incredibly proud that the Children’s Centre is one of the leading centres in the country through our support.”
You can donate at www.piedpiperappeal.co.uk/online-donation-form/.
It is the last big thing we shared together, and we have so many family photos and funny stories because that holiday was so amazing Charlene Spackman