The family of a three-year-old boy urgently need to find a life-saving stem cell donor after the toddler was given just months to live.
Arlo McArthur, from Milngavie, East Dunbartonshire, was diagnosed with a life-limiting blood disorder at just ten weeks old.
The only potential cure was through a stem cell transplant from an unrelated donor, which was unsuccessful. Now he has just months left to find another match.
Arlo’s mum Nicole said: “When you hear the words ‘your baby needs a stem cell transplant urgently to survive’, your heart skips a few beats.
“When you hear they have found a perfect match, you feel the most blessed you ever have.
“When you receive the transplant, you think your son has been cured of his condition. Then at every check in, to be told his levels are slipping away, to then hear if he doesn’t have a second transplant, he faces a very poor quality of life and a short quantity.
“As you can see, there is a rollercoaster ride here.”
Arlo has three matches on the register already, but doctors say they are all too old and cannot take the risk again.
Nicole, 37, said: “We have looked at every possible option for Arlo and we have been told the best would be a young healthy male. Unfortunately, there is no match on the register.”
Just two weeks after Arlo’s birth, Nicole and husband, Ian, 31, realised there was something wrong.
Nicole said: “We rushed him to A&E after he vomited a blood clot. Doctors initially diagnosed a severe cow’s milk allergy and sent us home. Later he vomited again, and we found blood in his poo so we returned to A&E.
“It was suggested that it may be leukaemia as his platelets were so low. After that was ruled out, we waited ten more weeks for a diagnosis. I couldn’t believe it, I was just thinking ‘surely you must know what’s wrong with my child’.”
After several weeks in the dark, Arlo’s doctor mentioned that she thought his symptoms matched up with a rare syndrome.
The best chance of survival for patients diagnosed with Wiskott-Aldrich, a rare blood disorder, is through a stem cell transplant.
A transplant from an American donor was flown to the UK but after some initial positive signs it ultimately failed.
Nicole said: “Arlo had seizures followed by meningitis. His platelets became very low. We were told Arlo was in need of a second transplant or his quality of life would drop.
“I thought this meant he wouldn’t be able to play football with the other kids, but it turns out that it was much more serious than this.
“Doctors want to do the transplant by early spring. I know he’s a ticking timebomb, they just need to go-ahead and get it done.”
Anthony Nolan is a charity working to save the lives of people with blood cancer and blood disorders.
The impact of the coronavirus pandemic on Anthony Nolan’s fundraising activity and a large number of people joining the charity’s register in early December means there is a backlog of currently around 25,000 potential donors.
The charity has been overwhelmed with support and needs to raise up to an extra £500,000 to add people to the register, from ordering more swab packs to analysing completed swabs in its laboratory.
Henny Braund, chief executive of Anthony Nolan, said: “Finding a match would mean everything to Arlo and his family, and we’re doing all we can to find a stem cell donor to give Arlo a second chance of life.
“A perfect storm of the coronavirus pandemic, and a surge of 40,000 incredible people who have been inspired to join the Anthony Nolan register in the last month – by patients, like Arlo – means that we’re in urgent need.
“The best thing people can do is support Anthony Nolan’s work financially. By giving anything, together we can add all potential lifesavers to the register, and give patients like Arlo hope.”
Nicole is pleading for young men to join the register.
She said: “My boy has been through so much trauma and has so much more to endure but hopefully one day in the near future we can say he is cured and he can live his life without a worry.
“Please everyone if you can join the register do it. You may never get that call but if you do you will have the chance to save a life”
To join the register, or to donate, click here.