Why this Leyland mum recreated Christmas Day for her terminally ill 10-year-old daughter

The Leyland community has rallied round a mum recreating Christmas Day for her terminally ill 10-year-old daughter who is blind and disabled.

Tuesday, 31st December 2019, 5:00 pm
Matilda Moffatt (10) with her mum Melanie enjoying a special visit from Fr Christmas and his elf.

Matilda Moffatt, from Leyland, was so unwell on Christmas Day because of a rare genetic disorder called Batten disease that she couldn't even open her presents. The condition strips sufferers of their sight, mobility and speech, and often leads to death by the age of 12.

But members of Facebook group Leyland Hub have helped her mum Melanie to host Matilda's Magical Day on New Year's Eve, which kicked off with a snow machine and a visit from Fr Christmas and his elf at 11am.

Melanie said: "Matilda was crying and sleeping all Christmas Day and I didn't want her to have a crappy memory of it. She'd not been well for a week as she's had a cold and it's hard for her to fight it off because of her condition. I was sat next to her all day in bed and every time she woke up, she just cried. I couldn't get her up to open her presents."

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Melanie recreated Christmas Day for Matilda, who has Batten disease, on New Year's Eve because she was too unwell to enjoy it the first time.

The mum-of-one then put out an appeal on Facebook on Boxing Day asking for people to dress up as Fr Christmas and help her recreate Christmas Day on New Year's Eve.

And offers of help came flooding in.

"I've been absolutely overwhelmed by the support from Leyland Hub and how everybody has come together to help," Melanie added.

At four-years-old, Matilda was the first person in the UK to be put on a trial in 2014 with an American pharmaceutical company where an enzyme replacement called cerliponase alfa was injected into the brain. She was just one of four children trialling the drug worldwide - with the other three being in Germany. It costs more than £500,000 per person for each year’s treatment.

Rose and Chris Warren delivered Matilda's presents in their camper van.

But the NHS had refused to fund the life-lengthening treatment following the end of the trial in October - despite it helping to reduce the number of seizures Matilda suffered. NICE, a government body that decides which drugs and treatments are available on the NHS in England, had said a lack of long-term effectiveness meant the treatment was not “value for money”.

Her mum had called the decision "a death sentence" but the NHS later announced that it has struck a deal with manufacturers Biomarin to offer this drug to Batten disease sufferers not currently receiving treatment, by Christmas at the latest.

And now, despite a difficult Christmas Day, Matilda and her mum have finished the year on a high, with the help of Rose and Chris Warren, who own a vintage VW wedding business in Rufford.

The pair, who handed out presents on the children's ward at Royal Preston Hospital earlier this month, dressed up as Fr Christmas and his elf and delivered Matilda's presents to her house in Slater Lane before taking the 10-year-old and her mum on a trip in a vintage camper van around Leyland to places close to the family's hearts.

Fr Christmas' elf enjoying the snow machine.

Rose said: "I read about what Matilda's been through and it makes it more poignant and touching. I think it's really about raising awareness of Batten disease and what she's been through. I didn't know about it until I saw the appeal."

The business woman added: "The feeling of giving something back is better than any present. There's more meaning to it. I love putting my elf outfit on because I know it brings so much happiness to people."

Matilda has been staying in Derian House for respite while her mum prepared for her special day.

Melanie said: "I'd like to thank everyone who's offered help on Leyland Hub or to be Fr Christmas. I wasn't expecting so many messages. I was overwhelmed. I wasn't able to reply to them all but they mean so much.

Matilda and Melanie setting out on a trip around Leyland to visit places close to their hearts.

"Going round town in a camper van listening to festive music with Fr Christmas - it's a bit like something off a movie set. I feel like the Queen and Matilda is my princess."