Family of ‘ princess warrior’ with rare condition to raise money for therapy

A RENFREWSHIRE toddler diagnosed with a rare disorder at just three months old is fundraising for vital equipment and treatments.

Grace- Louise Darroch has a rare neurodevelopmental condition after having the first of what turned out to be many seizures in her mum’s arms.

CDKL5 deficiency disorder ( CDD) affects the gene that helps make a protein which is essential for normal brain and neuron development.

It only affects one in 42,000 people and is more common in girls than boys. Now three years old, every aspect of Grace- Louise’s development is greatly affected, including cognitive, motor speech and visual function and she will require life- long care.

Sleep disturbances are common and children with CDD are often given the title “party babies” as they can regularly go for more than 24 hours without sleep.

Grace- Louise underwent surgery during lockdown to have a gastronomy tube also known as her “magic button” fitted for her to be fed.

While much of her essentials are covered by the NHS, the reality of funding the equipment and therapies for Grace- Louise is harsh, with the buggy she needs costing £ 5000 alone, and spider therapy costing £ 75 an hour.

These treatments are carried out over the course of a week meaning two hours of therapy a day for three weeks would cost £ 2250, and it is not known how many of these sessions are required.

Grace- Louise attends specialist nursery Riverbrae School in Linwood having spent a year at Bridge of Weir Nursery before a space became available to her in the specialist setting.

A POSITIVI- TEA fundraiser will be held on Saturday, April 20 at West Halls, Main Street, Houston.

The day will include home baking, tombola, raffles, pocket money toys, books for sale, the chance to meet lambs, live music, a bouncy castle and soft play.

Linda Ruxton, Grace- Louise’s aunt and event organiser, said: “Grace- Louise is an inspiration and holds a place in the hearts of everyone she meets.

“Through Grace- Louise’s sheer determination, she has made us cheer, dance and beam with pride celebrating every single one of her achievements, be it holding her dummy by herself for the first time, standing up or taking steps.

“Grace- Louise is our princess warrior, but now we need to ask for others to join us in our fight with CDKL5 deficiency disorder.”