Axl Walker may have been only three but he touched many with his cheeky grin and sunny personality.
Axl suffered from a very rare blood condition which meant he was unable to produce red blood cells. He had to have a blood transfusion every month of his short life. Despite two bone marrow transplants, earlier this year he caught an infection which he just couldn’t fight and died in March this year, just days before his third birthday.
But hospital staff and his family are ensuring that his memory lives on with the launch of Axl’s Toy Fund. Tomorrow people are being urged to Spread Some Sparkle for Axl, to raise money for specialist play equipment for children receiving treatment throughout the year.
“Axl was well known in the hospital as he probably spent half his life there, but when staff said they wanted to name the appeal after him it was fantastic,” says mum Claire Gearie.
“He was such a cheeky chappy and was always smiling no matter what was happening to him.”
Claire and partner Ian knew quite early on in the pregnancy that there was a problem with their unborn son.
“The scan showed fluid around his brain and they said he had anaemia,” recalls Claire.
“It meant that Axl had to have four blood transfusions before he was even born. We were warned that I could miscarry but without the transfusions he would definitely die. So there was only one choice.”
The couple were also told that Axl only had a two per cent chance of survival and they should consider a termination.
“We were determined that as long as Axl was fighting then we would too.” Axl was born eight weeks early at Leeds General Infirmary before being transferred to Bradford Royal Infirmary at four days old.
At five weeks old he was diagnosed with CDA – Congenital dyserythropoietic anemia.
“They said it was a genetic condition but Axl’s older brother Lucas was fine. It was just really bad luck.”
The family were told early on that Axl’s only chance of survival was a bone marrow transplant. He had one from his dad Ian which didn’t work and then a second which did work and the family started to hope.
But the chemotherapy which Axl had to ready his body for the bone marrow transplant had laid him low and he caught an infection which he couldn’t fight and died three weeks later.
“It was heartbreaking,” says Claire. “He just couldn’t fight the infection. One of the hardest things was that Lucas wasn’t allowed to see him when he was poorly – just to say goodbye. I felt so guilty as I spent all my time on a bed beside Axl while Lucas was at home with his dad. I only got to see him once a week and then he couldn’t understand why he couldn’t see his brother.”
Lucas is now seven and receiving counselling to deal with the loss of his little brother. He is looking forward to Christmas, although it will be very hard for Claire and Ian. However they are concentrating on Axl’s Toy Fund and the Spread Some Sparkle for Axl campaign which takes place tomorrow.
“It is very fitting that people should wear something sparkly for Axl – he was such a sparkling personality,” says Claire who is also urging people to donate to the toy appeal. “Anything which makes hospital less scary and distracts children from their treatment, and the pain and discomfort they are in, makes a huge difference,” she says.
“I have been that parent and I know how hard it is for the child and whole family.”
The Toy Fund is organised by Bradford Hospitals’ Charity.
A spokesman said: “We named our fund-raising appeal for toys after Axl (Axl’s Toy Fund) and we launched our Christmas campaign – Spread Some Sparkle for Axl, because he was a regular visitor to the hospital and a very popular little boy. The idea is similar to the Christmas jumper day, in that we ask people to wear something sparkly on Friday, December 14, and give a donation to Axl’s Toy Fund”. The charity has secured the support of Bradford City FC, who will be promoting the campaign in the run-up to Christmas at their home games including getting everyone to turn on their mobile phone lights at half time on Saturday – as well as the backing of the Alhambra Theatre and the stars of its pantomime, Aladdin.
Sylvie Collins, consultant clinical psychologist in Bradford, said: “Play is crucial for healthy development. It’s how we all learn. It’s also important for developing coping strategies, managing emotions and problem solving. From a health and wellbeing perspective, it’s absolutely vital. For children, play can help to normalise the situation they are in.
“It keeps them connected to everyday activities and distracts them from hospital routines. If we are playing and relaxed, there is research to support that we are better able to problem solve, be creative and adopt different coping strategies.”
Alison Kay, hospital play specialist at Bradford Royal Infirmary, explained that Axl’s Toy Fund enables play specialists to buy toys suitable for all children, including those with sensory impairments, mobility problems and other additional needs. For example, fibreoptic lights, bubble tubes, flashing tambourines and light projectors are all helpful to stimulate senses and entertain children who don’t have the play skills for other toys.
She added: “Not only does play aid recovery, but it gets our young people talking. It also helps them open up about what’s upsetting them, which we might just be able to help with.”
For Claire, knowing the toys bought in Axl’s name are going to support other children, helps her deal with the loss of her special little boy.
Axl’s Toy Fund enables play specialists to buy toys suitable for all children, including those with sensory impairments, mobility problems and other additional needs. For example, fibre optic lights, bubble tubes, flashing tambourines and light projectors are all helpful to stimulate senses and entertain children who don’t have the play skills for other toys.
To make a donation to Axl’s Toy Fund, visit www.justgiving.com/campaign/axlstoyfund
To find out more about what Bradford Hospitals’ Charity is doing for Christmas, visit www.bradfordhospitalscharity.org/events/christmas.
Alternatively, contact Hayley Collis or Elaine Drake on 01274 274809 or email [email protected]