Rugby club take on Ben Vane climb for Houston four-year-old with rare condition

This weekend, thirteen members of Garnock Rugby Club 1XV will climb Ben Vane to raise funds for Grace-Louise Durroch, a four-year-old girl from Houston diagnosed with CDKL5 Deficiency Disorder. This rare genetic condition means Grace-Louise needs 24-hour care and can suffer up to 30 seizures daily.

Grace-Louise's Story

Grace-Louise's mother, Leeann Durroch, a principal teacher, recalls that her daughter was born during the Covid lockdown. Despite having three children already, Leeann sensed something was wrong from the start. Grace-Louise began having seizures, leading to a diagnosis of CDKL5 Deficiency Disorder just before she turned three months old.

"We were told she wouldn’t be able to walk, talk, or use her hands," Leeann said. "She has exceeded expectations by pulling herself up and vocalizing, but her abilities fluctuate. This year alone, she’s had several hospital admissions and was even catatonic at one point."

Fundraising Efforts

Faced with the overwhelming demands of caring for Grace-Louise, Leeann's sister, Linda-May Ruxton, initiated fundraising efforts. The family turned to Tree of Hope, a charity that ensures transparent fundraising, directing all proceeds towards essential equipment and therapies for Grace-Louise.

To date, the family has raised nearly £20,000 through various events, including a generous contribution from Alex’s employer, which triple-matched £5000 from a tea party fundraiser.

The Climb

Grant Ruxton, Grace-Louise’s uncle and coach of the Garnock Rugby Club team, is leading the climb. The team will tackle Ben Vane, a challenging 915-meter Munro, on July 27. They’ve pledged to carry an extra 10kg for every £10 raised to encourage donations.

Grant expressed gratitude for the community’s support: “We’ve already raised several thousand pounds from a summer ball, and we’re always happy to help where we can. This climb is part of our pre-season training and a way to support Grace-Louise.”

How You Can Help

The family aims to raise funds for a specialized bed costing around £6000, a £4000 buggy, and intensive therapies in London costing approximately £3000 per week, excluding travel and accommodation.

Becky Andrew, CEO of Tree of Hope, praised the community’s efforts: “It’s heartwarming to see such support for a family. We wish the rugby club the best of luck with their challenge and are here to support Grace-Louise’s fundraising journey.”

To sponsor the Garnock Rugby Club team or donate to Grace-Louise’s fund, visit JustGiving or Tree of Hope.