'Because of this incredible boy and his mummy, our baby was given the chance of life'
A Benwick mum has paid tribute to a pioneering mother whose determination to save her own son, has saved the lives of thousands of others including that of toddler Daniel McAvoy.
Daniel's grateful mum Georgie has not only paid tribute to Shirley Nolan and the legacy she set up in memory of her tragic son Anthony, but has joined the latest campaign to encourage more people to join the Anthony Nolan transplant register.
Georgie, and husband Andrew who have an older daughter Holly, were devastated when Daniel was diagnosed with Wiskott-Aldrich syndrome at just a few months old and launched a heartfelt plea for people to sign up as potential donors to save their baby's life in August 2019 - a campaign supported by the Fenland Citizen.
The only way to save Daniel was a stem cell transplant, just like Anthony Nolan needed nearly 50 years ago.
Sadly Anthony never found a match and died at the age of seven in 1979, but his legacy enabled Daniel to undergo a life-saving transplant last year.
Daniel still has a log road ahead, but his determined family aren't giving up and have shared their story to honour what would have been Anthony's 50th birthday and to help others still waiting for their second chance.
Here is Daniel's story in Georgie's own words: "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.
"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.
"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."
