A HIGHLAND dad whose daughter is one of only 125 people in the UK with a rare life-limiting genetic disease is pulling on his running shoes for a charity which he hopes will one day find a cure.
Scott White, 29, from Inverness, is to complete the Baxters Loch Ness Marathon for the Batten Disease Family Association (BDFA) – an organisation which has been a pillar of support to his family since eight-year-old Blainie was diagnosed with the neurodegenerative condition.
The youngster was aged just four when her family noticed that she was frequently losing balance and falling over easily.
Her condition steadily deteriorated with her vision and speech becoming impaired and her motor skills becoming affected.
After numerous tests and hospital stays Blainie was diagnosed with Batten disease earlier this year – a condition that the medical profession has only come to understand since the genes causing it were identified in 1995.
Blainie, who also has seizures and fits due to a form of epilepsy, is no longer able to walk and needs a wheelchair to get around.
But, despite all her difficulties, Blainie is a happy-go-lucky youngster with a real zest for life.
Scott, who lives in Smithton with partner Laura Forsyth, said: “Life with Blainie’s condition was extremely hard at the start, but we all just get on with it for Blainie’s sake. We just want to support her and give her a good quality of life.
“She now goes Drummond Primary School as she gets special needs support that she couldn’t get in a mainstream school. It’s great there – she has a music class, soft play area and sensory rooms which all aid her in being comfortable and at ease.
“As her dad, I take on everything with her. She is my best friend and she always makes me smile whenever I see her face.
“Nothing stops us achieving what we want, like going to Disneyland Paris this year. We wanted to show everybody that Batten disease won’t beat us and we can do what we want to do.”
The BDFA has been an excellent source of support and information for the family, which also includes Scott’s son Kion, 11, and Laura’s boys Alfie, aged eight, and six-year-old Olly.
With so few other recorded cases – and less than 30 of Blainie’s age – it has been difficult to understand what the future may hold.
There is no cure for Batten disease, and while the BDFA supports ongoing research into finding one, it has also supported the family in managing Blaine’s symptoms to allow her to maintain a quality of life.
Scott has been heartened by the way family and friends have rallied around with moral support and in more practical ways. His friends Alex Mezals, 35, and Ricky Lennan, 37, will be taking on the 26.2 miles of the Loch Ness Marathon with him on 24 September.
Lorry technician Scott added: “Everyone has been a great support over the last few years, always giving up a bit of their time to come and see Blainie and give her attention, which she loves. I can’t thank Alex and Ricky enough for doing this with me – although I will be aiming to beat them.
“I did one other marathon four years ago, but I was really keen to do Loch Ness because I have heard such great things about it. A few of my friends have done it and say it’s really good – and that the views are amazing.
“Training so far is going really well, and I’m getting in the miles before work and at weekends. My goal is to aim for eight minute miles – and I’ll be motivated to keep going knowing that Blainie and the rest of my family will be waiting for me at the finish.
“We don’t have a fund-raising target, but whatever we raise will help massively towards the research of Batten disease, ultimately helping other families that are going through the same situation as Blainie. There is no cure yet, but we hope to get one – and the more fund-raising we do, the better chance we have of fighting this disease.”
Many runners taking part in the Baxters Loch Ness Marathon - renowned for its scenic beauty and family-friendly atmosphere – will be taking part for charity. The main charity partner of the event is Macmillan Cancer Support and there are three lead charities – Chest Heart Stroke Scotland, Highland Hospice and MS Society.
Runners can also support 15 other affiliate charities, although hundreds of participants – like Scott and his friends - will use the event to raise money for good causes close to their own hearts.
In addition to the marathon, the event also incorporates at the River Ness 10K, 10K Corporate Challenge, River Ness 5K and the Wee Nessie fun run for pre-schoolers. Participants are all ensured of a spectacular finish line experience, where they will be presented with a goody bag and post-race soup and roll courtesy of sponsor, Baxters.
The finish line is at based around the Event Village at the Bught Park in Inverness where runners and spectators can enjoy the Baxters Food and Drink Fayre, a Sports Expo, live music and activities for children.
Entries for all races are open online now at www.lochnessmarathon.com with general entry to the marathon open until 1 July.
Entry for international, club and charity runners remains open until 4 September, and this is also the closing date for 10K and 5K. The event is active on Facebook at facebook.com/lochnessmarathon and on Twitter @nessmarathon – use the hashtag #RunLochNess.