A mum whose son died two days after Christmas without ever seeing the gifts he'd longed for has described the "unexplainable" year she has experienced. Katy Yeandle said she has to "switch [her] feelings off" to be able to talk about the loss of beloved son Joseph whom she called “the kindest, funniest, and most loving boy”.
Courageous Katy, from Brynamman in Carmarthenshire, has also spoken of her determination to help families to spend valuable time together after setting up a charity inspired by her son. In April last year he was diagnosed with stage four high-risk neuroblastoma, which is a rare childhood cancer. Joseph was initially given just a 50% chance of survival after being diagnosed with the aggressive form of cancer.
When Katy was later told that her son’s chances of survival were only 5% if he relapsed she vowed to do everything in her power to prevent it from happening. Although Joseph was receiving treatment through the NHS Katy and her family decided to fundraise in order to access treatment that wasn’t yet available in the UK.
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The family needed £250,000 to get a bivalent cancer vaccine in New York, which was going to prevent young Joseph from relapsing. But sadly Joseph relapsed and died on December 27, 2021.
Katy has now spoken of her grief nearly a year on with both Christmas and the first anniversary of Joseph's death looming. She said: “The last year has been a nightmare. Losing a child, you just can’t explain the feelings because it’s too hard to explain.
"It’s a hole in your heart that never goes away. It’s always there with you for every second of every day – you can always feel that hole inside of you that is never going to fill. Every single day for the last year since Joseph’s gone we’ve just had to learn to live with that kind of pain in a new way.
"We have another son called Liam and we do it for him. It’s something I never thought that would happen to us. I know a lot of families say the same thing – they think that something like this would never happen to them and then unfortunately that nightmare happens.
"That nightmare happened to us and now it is something that will never disappear from us. I think about how long that journey will be until I eventually meet Joseph again. Living with that pain feels so hard to even comprehend but you’ve got to do it – you’ve just got to carry on until we see him again.”
In memory of Joseph Katy and her family have launched a charity called Joseph’s Smile. Its purpose is to provide financial support via monthly top-up grants to children who need to access treatment or equipment that is not currently available through the NHS.
Katy said the charity is something she wishes would’ve been there to help her and her family last year. She said: “Looking back I do not regret fundraising for the cancer vaccine because as his parent I had to do everything I could to save his life.
"But my one regret is that I missed valuable time with Joseph due to fundraising and this is time I will never get back again. I was answering phone calls and emails, standing there with a collection bucket, creating posters day after day, to get that money that we needed.
"I founded Joseph’s Smile because he never stopped smiling. I wanted to remember his smile forever so we named the charity after him. I regret wasting the amount of time that I didn’t spend with Joseph but if I had to do it again I still would’ve fundraised because he needed that. If there was a charity out there that meant we didn’t have to fundraise and a charity out there that raised those funds that he needed that would’ve been so beneficial."
So far there are more than 400 families in the UK fundraising to access medical treatment or equipment. As Joseph’s Smile is still a new charity they only have the necessary funds to support six children.
At the start of every month Joseph’s Smile will equally divide the funds raised for the grant scheme between the children. The charity aims to not stop giving these grants until the families have reached their targets as well as providing a time for families to endure less stress and gain more valuable time together.
"Joseph’s Smile approach to this is unique," Katy said. "And it’s something that no other charity is currently doing. We do not want to give a small one-off grant to these children – we want to fight alongside the families and support them at every step along the way."
Last year the owner of a local fairground site in the Brynamman Valley, Margaret Studt, got in contact with Katy and the family after hearing of their fundraising efforts for Joseph’s cancer vaccine. Margaret vowed to help the family and created Amman Valley Christmas Experience at the fairground.
This Christmas Margaret is continuing to support Joseph through the charity. The annual event has been open to the public since November 25 and will run until January 7. According to Katy the event includes an elf experience, a Frozen-themed forest, a meet and greet opportunity with the characters of Frozen, and a chance to meet Santa.
The charity has given Katy the strength to carry on and support children that are in need – especially during the Christmas period. December 27 will mark one year since Joseph’s death.
"It has helped me in many ways,” Katy said. “Knowing that I couldn’t get Joseph what he needed it felt like my energy had moved to helping children get what they needed.
"It’s been almost a year since Joseph’s death. The feelings are unexplainable. The only way I can cope is by switching myself off to be able to talk about – I switch my feelings off and then I switch them back on when I’m on my own.
"He passed away on December 27. He never opened his presents. He always wanted a Batman robot and he never got to see that.
"I remember hearing Christmas music as I walked into a shop, I remember breaking down and having to walk out. Then all of a sudden Margaret asked me if I wanted to launch a Christmas event to try and raise as much as we can for the children.
"I’ve gone from breaking down in a shop listening to Christmas music to being immersed in Christmas through this fundraising. And surprisingly it has helped me get my Christmas spirit back for my son. I’ve had to face my fears. And now it’s about facing those fears in order to overcome them. I don’t want any family to go through that and I don’t want any family to feel regret."
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