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 travel costs incurred to take their daughters to receive treatment and to make their home more accessible for Nicole who can no longer walk unassisted.

This September, on the anniversary of the date the couple found out about Nicole’s condition, they are planning to hold The Sweetheart Ball at The Hilton Hotel, Gateshead to help with their fundraising efforts. The night promises to be a great one with live musical entertainment, dancing, a three-course meal, a raffle and an auction, with compere Steve Walls.

To add to this exciting news, The Nicole Rich Foundation has been selected as one of three Chosen Charities for the current Lord Mayor of Newcastle’s mayoral year. ‘The Lord Mayor has been so supportive,’ Gail reports. ‘We had a meeting with her, she took a poster and got to meet Jessica. Like most people she’d never heard of Batten disease, but was moved by the story. She’s already starting to help us – on Batten Disease Awareness Day, she officially started the Blaydon Races.’

It cannot be denied that the journey the Rich family have been on is an extremely sad one but, with so many positives to look forward to, the family remain hopeful.

‘Nicole is doing well with her treatment,’ Gail says. ‘In our minds, while this is slowing the condition down, a cure will be found. There are labs in America and Europe working on it – they trial through mice, dogs, and it’s now up to primates – it has been proven to work, there are just some things they need to go through to transition from primates to humans. 

‘With Jessica,’ she continues, ‘You’d never know there was anything wrong – it’s a case of she hasn’t lost anything, so we’re of the mindset that she could potentially never show the symptoms. We’re taking it day by day.’

Tickets for The Sweetheart Ball are priced at £70 or tables of 10 can be booked for £600. For more information on The Nicole Rich Foundation and Batten disease or to help or donate, visit 
www.thenicolerichfoundation.org.uk

 

 

CHARITY DIARY

Support a local charity by attending one of these upcoming events

Let’s Do Lunch
Butterfly Giving and Family Help Darlington
The 35th anniversary North East Ladies Day Luncheon will be hosted by Toyah Wilcox and include a fashion show and shopping from a variety of stalls.
Tickets: £48
20 September
Hardwick Hall, Sedgefield TS21 2EH
www.northeastladiesday.co.uk

IT’S A MYSTERY
Daisy Chain
Grab your deerstalker hat and your pipe for a murder mystery event in aid of a good cause. Guests will enjoy a sparkling reception, three-course dinner and, of course, the opportunity to solve a gripping case.
Tickets: £55
29 September
Rockliffe Hall, Hurworth DL2 2DU
01642 531248
www.daisychainproject.co.uk

Have a Ball
The Calvert Trust
Enjoy a three-course dinner and live entertainment throughout the evening at The Calvert Ball – an annual event that has so far raised over £200,000 for the the charity which enables people with disabilities to enjoy outdoor pursuits, alongside their friends and families.
Tickets: £90
13 October
Hilton Hotel, Bottle Bank, Gateshead NE8 2AR
01434 250232
www.calvert-trust.org.uk

Published in: September 2017

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