“It’s the best Christmas gift I could have wished for.”
While many people will be looking forward to swapping gifts this Christmas, mum-of-two Lucy Campbell says she has everything she could possibly ask for.
Just seven weeks ago, her daughter Hallie became only the 15th person in the world, and the eighth in Europe, to have pioneering new treatment for a rare genetic disorder.
Already they are seeing the results - and it is all thanks to the generosity of Wiganers who donated £70,000 to fund the trip to Poland.
Lucy, who lives in Hindley, said: “I’m so grateful for all the help and the support we have received. It’s been overwhelming.”
Hallie has aromatic amino acid decarboxylase deficiency (AADCd), a genetic disorder that causes severe developmental delays, weak muscle tone, involuntary movement of arms and legs and painful seizures, known as eye crises. She cannot sit, walk or talk.
It is so rare that only around 130 people worldwide have the condition, including five in the UK, where Hallie is the only female.
While a new gene therapy treatment was available - which has a 100 per cent success rate for stopping the seizures Hallie had every couple of days - it was not on offer through the NHS.
But a medical centre in Poland offered to carry out the procedure at a subsidised rate, so her family decided to try to raise the £70,000 needed earlier this year.
Lucy said: “I was umming and ahhing for at least a month, I really didn’t want to go public and felt we were begging for money. I felt I was asking for help with the money, but I thought if I didn’t do this and I’m not Hallie’s voice, then we are never going to get anywhere.”
Hallie’s story was shared in the Observer in late August and donations poured in to an online appeal.
A host of fund-raising events were also organised by her family, friends and even strangers who wanted to help.
They packed bags, collected donations at a Wigan Warriors match, held a musical event in a pub and even climbed Snowdon with Hallie in her wheelchair.
The money rolled in and it took just two months to reach the £70,000 target, passing the finish line with a glittering race night at Haigh Hall Hotel.
It was just in time for Hallie and her family to travel to Poland for the procedure to be carried out.
Lucy, 28, said: “Hallie’s surgery date was November 5, Bonfire Night. It was a seven-hour surgery and it felt like a lifetime.
“Everything went really well, even better than we could have hoped for.
“She made a really quick recovery and we were discharged from the hospital after three days.”
Already the difference the surgery has made to Hallie is clear.
“She is really happy, really smiling,” Lucy said.
“She has a lot more movement. Her last eye crisis or seizure was on November 19 and she has not had one since, so they have gone completely now.
“We went to Great Ormond Street Hospital for a follow-up appointment and her consultant was really impressed with how she has recovered.
“She is so vocal now, she is like a chatterbox. She’s like a baby when they babble, she babbles all the time now.
“She is doing so well. I’m proud of her. She is so resilient, she takes everything in her stride.”
Hallie also has more head control and no longer has to take two medications, one of which involved 15 tablets every day.
Her mother says the procedure has given her daughter “a new lease of life”.
Lucy said: “It’s made a massive difference in her life. All those hours we lost when she was in eye crises, when it took a full day up, we have gained so many hours already.”
It means the festive season is even more special for the whole family, which includes Lucy’s older daughter Macy, nine, and her partner Barry Gumbley.
Lucy said: “There hasn’t been one Christmas in Hallie’s six years of life when she hasn’t had an eye crisis. We have to keep it low-key and she can’t open presents because it’s too much and she would go into eye crisis.
“This year I’m hoping we have an extra special Christmas. Because she has more movement, she will be able to open presents.”
It is hoped Hallie will make even more progress in 2020 - but first her mother has to let everything that has happened this year sink in.
She said: “I feel like I have lived in a dream, it doesn’t feel real. It doesn’t really feel like I have been to Poland. It’s crazy, it has been a massive whirlwind.”
Lucy paid tribute to everyone who has helped to ensure Hallie could have the treatment.
“The team in Poland was incredible,” she said. “They were so compassionate with the care and they were so loving with our family. They looked after Hallie so well.
“I want to thank all our supporters as well, everyone who contributed. If it wasn’t for them, we wouldn’t be here now.”
Hallie and her sister Macy were recently surprised with a family holiday to Disneyland Paris.
And they are now looking forward to a Christmas at home surrounded by their loved ones as they celebrate the end of a life-changing year.