Big-hearted rugby players are among the supporters who go the extra mile to enhance the life of much-loved little girl, Grace-Louise
The life of a four-year-old girl, whose rare genetic condition causes her to have up to 30 seizures a day, is being enhanced by tireless fundraisers, including big-hearted members of a Scots rugby team.
“Feeding her was very difficult. At that time, everything was done by Zoom, including getting help with breast feeding. I knew there was something not right.” After what her mum describes as “a barrage of tests,” Grace-Louise was, at the age of nearly three months, diagnosed with CDKL5 Deficiency Disorder – a rare genetic condition that occurs in one in 60,000 live births.
At the age of just one, she was fitted with a percutaneous endoscopic gastrostomy tube – a feeding tube inserted into her stomach wall to allow her to receive nutrition directly into her tummy. “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,” explained 45-year-old Leeann, of Houston, Renfrewshire, whose family named her inspirational daughter ‘Warrior Princess.’
Children’s charity Tree of Hope exists to help families fundraise for children like Grace-Louise with healthcare needs which the NHS can’t support, and provides charity status to benefit from Gift Aid and corporate support, while also providing donor reassurance. Recently, 13 members of Garnock Rugby Club 1XV, of which the Darroch children’s uncle, Grant Ruxton, is coach, climbed Ben Vane to further boost the fundraising total.
Charity Houston Renfrewshire Children Long Reads Rugby Lanarkshire Lanarkshire News
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