Help our ‘Princess Warrior’ fight rare condition
Grace-Louise a wee fighter
A Renfrewshire family is inviting Buddies to join them for a cup of ‘positivitea’ to raise funds for a brave youngster suffering a rare condition.
Three-year-old Grace-Louise Darroch is the youngest of four children and was diagnosed with a rare condition called CDKL5 Deficiency Disorder at three months after having the first of what turned out to be many seizures in mum Leeanne’s arms.
This has led to Grace-Louise being required to be fed via a gastrostomy tube – and she had to undergo surgery to have her ‘magic button’ fitted during the Covid-19 lockdown.
The rare disorder affects around one in every 42,000 people and is a neurodevelopmental condition.
CDKL5 is a gene that provides instructions for making a protein, and CDKL5 deficiency can cause increased risk of seizures.
Every aspect of Grace-Louise’s development is greatly affected, including cognitive, motor speech and visual function and she will require life-long care.
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 a specialist setting.
Grace-Louise’s aunt is now organising a Princess Warrior tea party to raise funds for intensive therapy that will allow Grace-Louise to reach her goals.
Linda Ruxton told the Express: “The doctors said that she was always going to need 24-hour care and that there will be lots of things that she probably wouldn’t be able to do, such as walk, talk, or have purposeful use of her hands, but she has decided to prove them wrong a little bit at a time.
“She has worked so hard to be able to pull herself up, to stand and even to take steps, despite having lots of seizures every day, which means that she must take lots of medication through a special button in her tummy – her ‘magic button’.
“Doctors have said that with intensive therapies, she might be able to achieve more goals but she will need to travel for this expensive treatment as she can’t get it here in Scotland.”
While much of Grace-Louise’s essentials are covered by the NHS, the reality of funding the equipment and therapies for Grace-Louise is very expensive, with the specialist buggy she needs costing £5,000 and Spider
Therapy costing £75 an hour.
These treatments are carried out over the course of a week. That would mean two hours of therapy a day for three weeks would cost £2,250 and the family don’t know how many of these sessions will be required.
Linda added: “Grace-Louise is an inspiration and holds a place in the hearts of everyone she meets. Her mum and dad have called her a ‘Princess Warrior’ since she was a tiny baby.
“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.”
The Princess Warrior tea party will take place on Saturday, April 20, at the West Halls, Main Street, Houston, to share a cup of ‘Positivi-tea’ and help raise some much-needed funds.
There will be home baking, tombola, a raffle, pocket money toys and books for sale, a chance to meet spring lambs, live music, a bouncy castle, soft play and much more.