KIND-hearted stars from Garnock Rugby Club's first XV are set to take on a fundraising challenge for a four-year-old girl with a rare genetic condition.
Grace-Louise Durroch was diagnosed with CDKL5 Deficiency Disorder before she was even three-months old.
The rare condition means that Grace-Louise needs 24-hour care and can suffer up to 30 seizures per day.
Her mother Leeann, who lives with her husband Alex and three sons in Houston in Renfrewshire, explained how this affects her daughter.
She said: "Grace-Louise was born during the Covid lockdown when they were keen to get people out of hospital as soon as possible. But having already had three children I could tell straight away that something wasn’t quite right.
"She started having seizures and after a barrage of tests was diagnosed with CDKL5 Deficiency Disorder just before she was three months old.
"We were told she wouldn’t be able to walk, talk or use her hands. She has exceeded expectations – pulling herself up and vocalising – but what she can do goes up and down.
"She has had several hospital admissions this year and at one point was catatonic."
It was at this stage that the family looked for ways to fundraise in their bid to support Grace-Louise - with the NHS unable to support all of her healthcare needs.
DONATE TO THE GRACE-LOUISE'S FUNDRAISER HERE
And, with the help of Leeann's sister Linda-May Ruxton, the family found there were plenty of people and organisations happy to help.
Family, friends and the local community have rallied around their fundraising efforts, with donations of over £20,000 received so far.
The latest challenge was organised with the help of Linda-May's partner - and Grace-Louise's uncle - Grant Ruxton, who is a coach at Garnock Rugby Club.
The family is also being supported by children’s charity Tree of Hope which helps families fundraise for children like Grace-Louise with healthcare needs where the NHS can’t support, and provides charity status to benefit from gift aid and corporate support whilst also providing donor reassurance.
Leeann explained: "It was when we got to that stage at the beginning of the year that my brilliant sister Linda-May Ruxton started looking at fundraising for Grace-Louise – Alex and I both work full-time and it was becoming simply too much to deal with by ourselves.
"When you have a child with additional needs, no one gives you a handbook, you have to just work it out for yourselves.
"‘I wasn’t sure about fundraising – I was worried that people might see me in the shops after we’d held an event, for example, and wonder about the money I was spending.
"But Linda found Tree of Hope which makes the fundraising very transparent for everyone to see – every single penny goes towards equipment for Grace-Louise.
"Our friends, family and community have been amazing – we’ve already raised more than £20,000 from a series of events, including Alex’s employer - the Edrington Group - generously ‘triple matching’ £5000 we raised from a tea party through their charitable foundation.
"We’re so grateful to Grant and the rugby club for taking on this climb for Grace-Louise.
"We hope to use the funds towards a specialised bed which costs around £6000, a buggy which costs around £4,000, and intensive therapies in London which are around £3,000 per week before travel and accommodation."
Grant says that the club, who have already helped contribute towards the fundraising efforts, are more than happy to offer their support.
Their latest effort will see 13 of the club's first team players tackle Ben Vane on Saturday, July 27.
DONATE TO THE RUGBY CLUB'S FUNDRAISER HERE
Grant commented: "As a club we’ve already done quite a lot of fundraising for Grace – we raised several thousand pounds from the summer ball.
"But we’re always happy to help where we can and are also taking on this climb as part of our pre-season training.
"We’ve also pledged to carry an extra 10kg of weight up the hill for each £10 raised to encourage people to donate more.
"We’re doing the climb on July 27 and expect it to take about five hours up and down. Ben Vane is 915 metres high, which gives it Munro status.
"It’s the shortest, but one of the hardest. It’s sometimes described as like the little drunk guy at the end of the bar who wants to pick a fight with you!"
Becky Andrew, CEO of Tree of Hope who have been supporting the fundraising efforts, added: "It’s always lovely to hear about a community getting behind a family in the way that is clearly happening here.
"We wish the rugby club members the best of luck with their impressive challenge and the family with their ongoing fundraising for Grace-Louise, and are here to help however we can."
Those looking to donate to the rugby club's fundraiser can do so online at justgiving.com/fundraising/garnock-climb-ben-vane-for-grace-louise.
While Grace-Louise Tree of Hope fundraising page is available at treeofhope.org.uk/ways-to-give/childrens-campaigns/grace-louise-darroch-warrior-princess/.
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