A Family has spoken of their heartache given the news that their little princess will soon become blind and bedridden.
Four-year-old Matilda Moffatt, who lives with her mum Melanie and step-dad Steven Brain in Slater Lane, Leyland, has been diagnosed with a fatal condition which is already meaning she is losing the ability to speak, walk and eat properly.
Late infantile CLN2 disease, a form of Batten Disease, occurs in fewer than one in 100,000 children, and sufferers tragically don’t often see their 12th birthday.
Matilda, who loves Disney, Peppa Peg and playing with her dolls, has spent the last 11 weeks in hospital since suffering a seizure at school.
It is unlikely she will be back home for Christmas.
Now, her parents are desperately trying to raise enough money to make vital adaptations to their house so their little girl can come home.
They also want to take her on a once-in-a-lifetime trip to Disney World and give her as many happy memories as possible before it’s too late.
“We want to do as much as we possibly can with her,” Steve said. “Time is really of the essence. Since she’s been in hospital, she’s stopped eating and walking properly, and her speech is going too. She can still say ‘Mummy’, but that’s about it.
“I just don’t know what is going to happen.”
Although Matlilda was slow to develop speech when she was younger, her parents had no reason to believe she 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.
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.
A 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.