PATIENTS with a rare form of progressive blindness have been given hope thanks to the fundraising efforts of a Northumberland family.
Elly and James Chapple from Alnmouth have smashed their £50,000 target to raise an incredible £67,000 for research into aniridia, an eye disease that affects their five-year-old daughter Ella. The funds they raised have been matched by the Cells for Sight programme to enable the research to get under way.
“We’re over the moon about exceeding the target and in awe of everyone who has donated their time, energy and money to help us achieve the goal and surpass it,” said Elly, 35.
In the last few months a Magic and Dine dinner organised by Elly’s sister at her school in Edinburgh raised £10,000 and The Alnmouth Beer Festival run by the Red Lion raised £2,750 in one evening. A number of local groups and individuals, including The Ashington Male Voice Choir, St Michael and All Angels and Eileen and Alan Ferguson, who run Fergusons Transport, have organised events.
The new research programme, led by Professor Julie Daniels of Moorfields Eye Hospital in London, will investigate how cell-to-cell communication is disrupted in the cornea during the progression of the disease with the aim of developing a cell therapy that could help patients retain their sight for longer.
The team will be building on results of previous successful stem cell research for adults with advanced aniridia.
Professor Julie Daniels said: “The research programme is very challenging but if it succeeds it will literally ‘shine a light’ on the understanding we need to develop therapies to prevent progression of aniridia-induced corneal blindness in younger people.
“We could not undertake this without the money raised by the Chapple family. It is a huge boost to our work which has the potential in future years to make a difference to the lives of children like Ella Chapple whose sight will need saving.”
Ella has a rare chromosome disorder called WAGR syndrome that affects one in 800,000. Those affected often have aniridia, where the iris is missing, and have a 50/50 chance of developing Wilms’ Tumour, a form of kidney cancer in children. They can be prone to genito-urinary problems and mental retardation.
But Elly says her daughter has made phenomenal progress over the last year.
“Ella is doing really well, augmented so much by her start at Northern Counties School in Newcastle, without whom she wouldn’t be where she is today,” said Ella. “In three months she has become a calmer, happier and more communicative little girl.
“The progress has been amazing. It’s changed our lives and hers too, the staff are wonderful and Ella is in a small class of three, so her needs are addressed fully.”
Healthwise, Ella is having her best winter ever. “She’s such a happy little girl with a very bright future and a huge amount of support for all that she does,” said Elly. “Nothing can stop her.”
Although their target has been reached, it won’t mean an end to the family’s fundraising efforts. “The campaign has its own legs now,” said Elly. “So I’m sure there will be more events.”
Donations to the ‘Shine the Light on anirida’ campaign are on going and more details on how to donate are available on 0207 566 2565, or by email to firstname.lastname@example.org. www.justgiving.com/Shine-the-Light-on-Aniridia.