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 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 £5k 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 £2,250, and it is not known how many of these sessions are required.

The Gazette: Grace-Louise attends a 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, Mains Street, Houston.

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

The Gazette: 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.”