Nine-year-old girl from Long Itchington who has a rare genetic condition will be able to enjoy more days out with her family thanks to a grant

Erin D’Arcy was born with a condition that affects bone growth

A Wigley Community Fund grant has been given to Erin D’Arcy, who was born with a rare genetic condition which affects bone growth. Photo supplied
A Wigley Community Fund grant has been given to Erin D’Arcy, who was born with a rare genetic condition which affects bone growth. Photo supplied

A nine-year-old girl from Long Itchington who has a rare genetic condition will be able to enjoy even more days out with her family thanks to a grant.

Erin D’Arcy was born with chromosomal syndrome Trisomy 9p and Léri-Weill dyschondrosteosis, which affects bone growth.

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As a result, she has other health issues, including heart conditions, and is unable to speak and can only walk a few steps at a time.

The pupil at Evergreen School in Warwick is able to get out and about in an off-road buggy that her parents bought themselves in 2019.

The family have been handed a £1,267 grant from the Wigley Community Fund to buy a number of additional accessories for the buggy, including beach wheels and a bike trailer, which will open up many more possibilities for Erin to enjoy days out with mum and dad Suzanne and Simon, and younger sister Edith, seven.

The grant will also pay for a new iPad and specialist iPad holder to help keep Erin entertained during the long periods of time that she spends in her buggy.

The Wigley Community Fund was established by The Wigley Group to share £10,000 every year among individuals and groups based within a five-mile radius of its headquarters in Stockton. Applications are opened up twice a year, in March and September.

Suzanne said: “Erin faces many battles every day, however she remains upbeat, mischievous and happy, and continues to defy the odds.

“There is some financial support available to us, but we have to self-fund most of the things that improve Erin’s quality of life, so the grant from the Wigley Community Fund will make a big difference and we are all very grateful.”

Suzanne added: “Erin’s sister learnt how to ride her bike in lockdown so one of the items the grant will pay for will be a bike trailer so she can join us on family bike rides, and while we’ve taken Erin to the seaside many times, having the wheels would be a huge help in getting her on the beach.

“Erin can only walk short distances and due to her very limited understanding of her surroundings she needs to be in her chair for her own safety.

"As she gets older and heavier, she will unfortunately have to spend more and more time seated in her chair, so as well as providing entertainment for her there are apps that she can use on the iPad to help her communicate her wants and wishes, which is so important for her to be able to do.”

James Davies, chairman of the Wigley Community Fund, said: “We set up our community fund with the express purpose of making a meaningful contribution to improving the lives of local people, whether that’s through one of the many community groups or by directly supporting an individual.

“This is the first grant that we’ve awarded a grant to an individual, and one that has a special significance because it will mean that Erin can enjoy doing some of the things with her family that many others take for granted.

“We look forward to receiving applications for the next round of funding in March and to find out even more about the communities around us.”

For more information about the Wigley Community Fund and how to apply go to: www.thewigleygroup.com