When Daniel was just a few months old he was diagnosed with Wiskott-Aldrich syndrome. The only way to save him was with a stem cell transplant – just like Anthony Nolan. Fortunately, because of Anthony and Shirley’s legacy, Daniel found a donor and he had his transplant in 2020. Daniel and his family still have a long road ahead, but they aren’t giving up. They have shared their story to honour Anthony’s birthday and to help others still waiting for their second chance.
Daniel was only three weeks old when he started having nose bleeds. After lots of visits to the doctors, lots of tests and lots of waiting, we were finally told that he had Wiskott-Aldrich syndrome. Like Anthony, he needed a stem cell transplant to survive. His big sister Holly wasn’t a match so then we were waiting to find out if there was someone on the register who could help save him.
I’d heard of the charity 'Anthony Nolan' before but I didn’t really know what they did until we needed them ourselves. Now, I feel so strongly about this charity. Anthony never found his match, and he died from this illness without a chance. Shirley tried with all her might, and never wanted another person to go through this. And because of this incredible boy and his mummy, our baby was given the chance of life. After months of searching, they told us they had found a donor for Daniel.
Thanks to the people who’ve kept Anthony’s legacy alive, Daniel was given a second chance at life. Help people like Daniel today.
After some setbacks, Daniel’s transplant was finally scheduled for March 2020. We packed our bags, arranged childcare for his big sister, Holly, asked our neighbours to care for our dog. Everything was taken care of, all we had to do was be there for Daniel.
One sunny morning we were in the garden playing with the children, taking every moment of ‘normality’ in before we took the journey to London to begin conditioning. But then my phone went. I answered it. Daniel’s nurse was on the other end. The transplant was off. Finally, Daniel was well enough for the transplant, but the world was sick. I cried so much. We sobbed and begged our consultant to reconsider. Let our baby live. But the answer was clear: Daniel’s transplant could not go ahead until we knew there was enough staff and intensive care beds available for him.
Devastated doesn’t even come close to how we were feeling but we held on. We kept our children close and held them tighter each night. We knew that Daniel could die, but we were determined that he wouldn’t die without at least fighting for it first. Daniel’s first birthday came and went, he was getting sicker each day. Then, finally, the news we were hoping for – his transplant could go ahead in June. It was Daniel’s chance.
The photo above was taken moments after Daniel's stem cells were infused into him. Eight minutes, that’s all it took. Those eight minutes were the moments we’ve waited his entire life for. We will be forever grateful to that beautiful person, his anonymous donor, and forever grateful to Anthony Nolan who found that person for our family.
Daniel’s recovery has been slow and there have been bumps in the road, but we are so grateful to have made it this far. I watch my husband and children play, roll around, laugh and love. It’s my favourite thing to do. Without Anthony Nolan, there would be a huge Daniel shaped hole in our world. There’s still a way to go but we’re not giving up.
We will be forever grateful to Anthony and Shirley for being the reason Daniel is here today. And hopefully, our story will inspire someone to donate to Anthony Nolan or join the register and help keep their lifesaving legacy going.