The devastated parents of a Leyland toddler who has been diagnosed with a fatal disease are fighting for their little girl to have the best experiences in life.
Melanie Moffatt and Steve Brain have stayed by Matilda’s bedside since she was admitted to Royal Preston Hospital in September.
Although she was slow to develop speech when she was younger, her parents had no reason to believe Matilda was unlike any other child her age, and described her as being a ‘normal, happy little girl’.
But when she suffered a seizure shortly after her third birthday last July, they learnt she had epilepsy.
The seizures continued, and she had a particularly bad episode four days after she started at Astley Park Special School in Chorley this September, which led to her being taken to hospital.
Following tests, the family was told two weeks ago she has the rare genetic condition late infantile CLN2 disease.
Symptoms normally start when a child is aged between two and four, and the disease progresses rapidly, with mental impairment, worsening seizures, and progressive loss of sight and motor skills, meaning sufferers tend to become blind and bedridden.
Her step-father Steve said: “We were given the devastating news on Children in Need day that Matilda had CLN2, and her walking, speech and appetite have already been affected.
“It’s heartbreaking, and it’s been an absolute whirlwind these past two weeks, seeing doctors and taking Matilda to see lots of different people.”
Steve and Melanie took Matilda down to London on Friday to look into a new clinical trial which will be the first of its kind for sufferers of this condition.
It will be the first time that the investigational drug in the trial will be given to humans.
They are still there now to discuss the implications, and Matilda was taken into hospital during the trip.
“It’s such a rare disease that only 22 children worldwide will be taking part in this trial,” Steve said. “We need to discuss what it involves and if Matilda is eligible for it.”
The family is also now aiming to raise funds to make their house on Slater Lane safe for Matilda to return home, where she loves watching Peppa Pig and playing with her six-year-old step-brother Daniel.
“At the moment we’re focusing on what we can do to get her home,” Steve added. “We need some sort of padding because she has seizures. It’s so distressing to see.
“We also want to get her some sensory equipment too.
“There’s so much to think about; a stairgate, push chairs and a new car chair, just so she can make the most of life again.
“Neither of us are working now. Matilda needs us 24/7, and we just want to spend as much time with her as we can.
“We’ve never done anything like this before, but we think it’s going to cost between £5,000 and £10,000 to make the changes to the house.
“After that, we want to save up to take Matilda to Disney World in Florida. She loves Mickey and Minnie.”
The campaign has been launched by Nicola Patterson, a parent and carer support manager at Astley Park Special School.
It’s called The Magic of Matilda, and almost £4,000 has already been pledged to the cause in the past two weeks.
If you would like to help, visit www.justgiving.com/The-magic-of-Matilda.