My gorgeous girl Maddi would have been 21 this year - this is how you can help keep her memory alive

It’s going to be at the Whitehall Hotel in Darwen, there will be a masquerade ball, live music, and her mum still needs to book the man for the casino. But instead of presents, they’re looking for donations for the charity set up in her name.

Cruelly, Madison - known as Maddi - died on Boxing Day 2011 aged seven, having fought cancer since 10 months old. Since that day, her family have been resolute in keeping her legacy alive - not least by starting a charity in her name, providing ‘Smile Bags’ to other children fighting cancer.

“I do it because if I didn’t, I’d have lost her all over again”, said her emotional mum Samantha, who not only runs the charity Maddi’s Butterflies, but also works at the charity shops six days a week. She added: “People don’t understand how important this charity is to me. I’m not doing this for recognition, this is her legacy, so she didn’t die in vain. I know she was here for a purpose, and that purpose was the charity and helping to improve other people’s lives.”

The charity takes referrals from Young Lives vs Cancer - formerly CLIC Sargent - and throughout the year provides meaningful treats for children going through what Maddi experienced.

“We always ask what interests a child has”, said Sam, of Lower Darwen, who gets help from husband Mark, 15-year-old daughter Scarlett. “If they say football, then I’ll go and get everything to do with the club they support. I go above and beyond, I won’t just give them anything. I don’t just get three for two smellies that are on offer, I want them to have something they’ll like.”

The charity can spend hundreds of pounds on a single Smile Bag, with the money largely coming from sales from their two charity shops - one in Accrington and one in Prestwich. But, as is the case across UK high streets, a rise in energy costs, staff wages and a cost of living crisis is putting pressure on what they’re able to make. They’ve also been targeted by thieves and people deliberately swapping price tags to make items cheaper.

How you can help

Now, to help continue Maddi’s legacy, her family want to hear from people who might be taking part in sponsored events, or businesses looking for a 2025 charity partner. Five tables are also still available at Maddi’s charity birthday event on September 27, which is looking for sponsorship.

Click here for information on the party

Sam, who is in remission from breast cancer and has been left with heart failure as a result of the treatment, added: “We held at 18th for her as well, but at that time I wasn’t very well and unable to stand, so this time it will be better. It’s important for me to mark these milestones. We talk about her all the time, I cry every day without fail, but I do that in private, I’m not looking for sympathy.”

Sam doesn’t think that she or husband Mark have properly processed the grief of losing Maddi, and she doesn’t want to. She said: “I don’t think I’ve grieved. I’m frightened of grieving incase it grabs me and I don’t come back from it.” She says people have made thoughtless comments about her ‘being over’ Maddi, or questioning why she still puts Maddi’s name on Christmas and birthday cards, but tries not to let it get to her. She said: “I think people don’t know what to say. But I will never get over losing Maddi. It’s like she’s just gone and I want to keep talking about her.

“That girl went through hell and she never complained. When I was going through my cancer treatment I realised what she had been going through - as a child. Here I was, as a grown woman, so I tried never to complain either.”

Get in touch with Maddi’s Butterflies here

Maddi’s story

Madison Jane Allan was born on September 23 2004 at a healthy 7lb 2oz and was everything her family hoped for. But at 10 months old was diagnosed with an aggressive ‘spaghetti-like’ neuroblastoma cancer that was blocking the bile duct on her liver which was making her jaundice and stomach very swollen.

She immediately started two courses of chemotherapy which only reduced the tumour slightly, but enough to unblock the bile duct. Doctors told her parents that an operation to remove the tumour was not an option as it had wrapped around her nervous system and main blood vessels.

Over the next few months, Madison slowly recovered from the chemotherapy. The tumour still remained, but didn’t trouble her and she was able to enjoy four years life as a normal child.

However, In May 2009 it was discovered that the tumour had begun to grow again - to three times its original size. Then four-years-old, Madison, underwent four intensive bouts of chemotherapy, but it had no effect. A last-chance 12-hour operation was aborted in November 2009, when she began losing too much blood during surgery.

As the tumour grew, pressing on her stomach, liver, and damaging one of her kidneys, Madison’s family decided that her only chance was to pay for her to have high-tech treatment not currently available in the UK. They set about trying to raise £250,000 to send her to either America or Germany, where a surgeon would attempt, once again, to remove the tumour from her stomach.

In January 2011, it appeared that the initial treatment had worked, as the tumour shrank by two centimetres all the way around, and she began to dance, sing and gain weight. But by September, the tumour was growing once again, spreading to the inside of her skull. Madison was well enough to enjoy a trip to Lapland to meet Father Christmas on December 8, but when she returned her condition deteriorated.

In the past two weeks the ‘spaghetti-like’ tumour wrapped around her vital organs had grown four centimetres, and she had lost the use of a kidney. Madison died in an ambulance on the way to the Royal Blackburn Hospital at around 10.45am on Boxing Day 2011.

Fundraising

During her short life, Madison and her family worked tirelessly to raise funds for charity - at first for the Five Star Scanner Appeal to fund a new MRI scanner at Manchester Royal Infirmary, and then to pay for Madison’s trial chemotherapy treatment abroad.

It was a chance meeting with Darwen stallholder Jill Kirkham, a Five Star fundraiser, that lead to Madison’s family raising £60,000 towards the total. They took on a series of events including two skydives, charity auctions and even inspired a naked calendar of Darwen Market traders.

Madison’s Oscar-themed birthday parties at the Whitehall Hotel in Darwen banked thousands of pounds as people paid to celebrate with a host of celebrities, including Jill’s best friend, Coronation Street actress Shobna Gulati. Madison’s story also inspired the East Lancashire community to raise over £100,000 for The Madison Allan Appeal - towards trial chemotherapy treatment at Greifswald Hospital in Germany.