Changing Lives: Hope for the Future | Living North

Changing Lives: Hope for the Future

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Every month, Living North highlights the important work being done by an inspirational individual, group or small charity. This time, we find out about The Nicole Rich Foundation and their battle against the little-known Batten disease

Gail and Matthew Rich have three children: Louis, Nicole and Jessica. They discovered that Nicole was suffering from Batten disease after she reached the age of two without speaking, had been diagnosed with global developmental delay and had just had her first epileptic seizure. She was diagnosed with the little-known condition while her mother Gail was pregnant with her third child, Jessica. Because Batten disease is genetic, Jessica was tested for it after being born and, unfortunately, despite currently showing no symptoms, it was confirmed that she also has the disease.

When they were first told of Nicole’s condition, Gail and Matthew were informed that there was no cure and no treatment. They were terrified that they would simply have to sit back and watch their daughter regress through various stages: loss of eyesight and motor skills, slow development and being unable to stand unassisted.

‘It’s quite easy to go into a very dark place and imagine what could be coming because the nature of the disease is horrendous without treatment,’ Gail admits. ‘This is why we felt compelled to help the Batten Disease Family Association (BDFA) – because they get no government support. If they weren’t here, we wouldn’t have had access to the treatment or the support we’ve received.’

Fortunately, after discovering the BDFA, the couple learned of a treatment that was available in Great Ormond Street and managed to secure Nicole a place on the programme. 

However, Gail and Matthew were told that Jessica was ineligible for the programme that her big sister was on, and so fought tooth and nail to get her accepted onto a sibling trial scheme that was being run in Germany. After much to-ing and fro-ing, involving some of the world’s leading experts in neurology, Jessica Rich became the youngest person ever to receive brain surgery to treat Batten disease.

With both daughters doing well, the family have set up The Nicole Rich Foundation to help with fundraising efforts for the BDFA; for research into separate therapy to help with the loss of eyesight that the disease can cause; for purchasing specialist equipment and taking the family on memory making adventures.

To raise money for the foundation and the BDFA, Nicole’s parents have taken part in Tough Mudder challenges, held local bake sales, climbed Ben Nevis and held a hugely successful ball in Newcastle. ‘We wanted to do something special a year on from the diagnosis, and The Sweetheart Ball was such a personal event,’ says Gail. The foundation has received a huge amount of local support — with their local community holding a funfair in Heddon, which raised £4,000. ‘The event was held by Chloe Blackburn, who created a whole funfair — there was music, rides and food, it was fantastic. We’ve been overwhelmed by the local support,’ says Gail. 

‘Whatever we do, wherever we go, we’re constantly talking to people about the disease. We’re trying to do everything we can,’ explains Gail. ‘It’s so important that people learn about the symptoms so that they can be recognised in children earlier on.’

The Sweetheart Ball 2018 will be held on Saturday 7th July at The Hilton, Newcastle, and promises to be a night to remember. With live music, a three course dinner, sparkling drinks reception and a grand prize draw, with some amazing prizes up for grabs.

For more information on The Nicole Rich Foundation and Batten disease, to help or donate or for tickets to The Sweetheart Ball, visit 
www.thenicolerichfoundation.org.uk

 

Published in: September 2017

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