Emily Moore
A FUNDRAISING event will take place this weekend to help buy vital equipment and treatment for a brave Renfrewshire girl who has a rare illness.
Grace-Louise Darroch was just three months old when she was diagnosed with CDKL5 deficiency disorder (CDD) after having the first of what turned out to be many seizures in her mum’s arms.
The rare neurodevelopmental condition affects the gene that helps make a protein which is essential for normal brain and neuron development.
It only affects around one in 42,000 people and is more common in girls than boys.
Now aged three, every aspect of Grace-Louise’s development is greatly affected, including cognitive, motor speech and visual function, and she will need lifelong care.
Sleep disturbances are a common symptom of the condition.
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 the Covid lockdown to have a gastronomy tube – also known as her ‘magic button’ – fitted for her to be fed.
She now attends nursery at Riverbrae School, in Linwood, having spent a year at Bridge of Weir Nursery before a space became available for her in the specialist setting.
While many of her essentials are covered by the NHS, being able to fund all of the equipment and therapies she needs is difficult for her family.
For example, the buggy GraceLouise needs costs £5,000, while ‘spider therapy’ costs £75 per hour.
This treatment is 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.
To help raise funds, a ‘positivitea’ event will be held at the West Halls, in Main Street, Houston, on Saturday.
Youngsters will be able to enjoy soft play and a bouncy castle, with live music also on offer, along with home baking, a tombola and raffles. There will also be the likes of books and pocket money toys for sale.
Event organiser Linda Ruxton, who is Grace-Louise’s aunt, said: “She 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 as we celebrate 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.”
Anyone who would like to support the fundraising drive but is unable to attend Saturday’s event can make a donation online at https://shorturl.at/clKP2.