Three-year-old Arlo urgently needs to find a lifesaving stem cell donor – and not for the first time
The family of a “fun-loving” three-year-old from Milngavie, East Dunbartonshire, diagnosed with a life-limiting blood disorder, are appealing for people to support blood cancer charity Anthony Nolan in raising urgent funds to add more donors to the stem cells register and give their little boy the best possible chance of survival.
Arlo McArthur, the golf mad baby brother to Carys, 17, Brooke, 16 and Holly, 13, was first diagnosed with Wiskott-Aldrich Syndrome three years ago, when he was 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.
Now Arlo’s disease has returned, he needs a second transplant to survive. Arlo has three matches on the register already, but doctors say they are all too old and can’t take the risk again.
That means Arlo urgently needs to find a young, male, donor.
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 need 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.
Any one of the 25,000 people who have applied to join the Anthony Nolan could be a match for Arlo or one of the 2,300 patients in the UK, who need a stem cell transplant from a donor each year.
‘Arlo’s strong-minded but also intense, sensitive and very loving’ reveals his mother, Nicole McArthur, 37. He is the first child born to Nicole and her husband Ian, 31, and is doted on by his three sisters.
Even at the tender age of three, Arlo’s passion and aptitude for golf shines through on family social media posts. ‘He first got into watching it with his dad on TV’ explains Nicole. ‘We took him to a driving range, and he was actually quite good. So, we bought him clubs for his birthday and it kind of went from there.’
It was only two weeks after Arlo’s birth that Nicole and Ian realised there was something wrong with their son.
Nicole recalls: ‘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 spending several weeks in the dark, Arlo’s doctor mentioned that she thought his symptoms matched up with a rare syndrome. Nicole recalls: ‘Although she refused to define the syndrome.it was very rare and therefore she didn’t want me researching it, she started looking into the possibility of Wiskott-Aldrich Syndrome. From then everything seemed to make sense.’
The best chance of survival for patients diagnosed with Wiskott-Aldrich, a rare blood disorder, is through a stem cell transplant.
‘When Arlo was diagnosed and we were told that he’d need a transplant, I was still a bit naïve. I didn’t know what bone marrow was’ admits Nicole.
‘He was diagnosed in November, they started searching the register, and a donor match was found for him on 22 December. It was the best Christmas present ever.
‘The donor was American, and the stem cells were flown over to us on the 28 February. Their landing in Heathrow unfortunately coincided with a massive snowstorm. They closed Heathrow and airports in Scotland, so the cells got stuck. We were so worried that we tried to charter a helicopter. Finally, we managed to get an Uber to drive the cells to Scotland.’
Arlo’s transplant was successful, and the cells were engrafting. But that started to change, and his engraftment started to drop with each check in.
Nicole recalls: ‘The doctor said this was extremely rare. But Arlo doesn’t play by the book. Arlo does the opposite of what the book says..’
‘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 did not want to risk using the same donor for Arlo. There were two other matches on the register for him, but neither were suitable. As they were both older donors, doctors didn’t want to take the risk. I was gobsmacked as initially there were three potential donors, now there were none.
‘The best case scenario was Arlo would have a full sibling match, but this wasn’t possible as Arlo only has half sisters. The next preferable thing would be a matching unrelated young male donor, but we know we don’t have that. We thought about all-sorts, we thought about having another baby. Arlo’s dad is a haplo, a half match, so if we can’t find an unrelated donor, we’re going with that because if we don’t, the alternative is much worse.’
Nicole continues: ‘Doctors want to do the transplant by early spring. I know he’s a ticking time-bomb, they just need to go-ahead and get it done.’
When asked what she’d say to all the young men reading this and thinking about joining the register, Nicole is unequivocable: ‘I would just say please, please read the information on it and join. It’s not as big a deal as people think it is. You can save a life by getting a few injections.
‘Before Arlo, I was so ignorant until I was in this situation but it’s an amazing thing to do. All of Arlo’s immediate family and friends have joined now. It’s not just our Arlo, there are plenty of Arlos out there who need your help.
Henny Braund, Chief Executive of Anthony Nolan says: ‘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.’
Anthony Nolan recruits people aged 16-30 to the stem cell register as research has shown younger people are more likely to be chosen to donate.
They also carry out ground-breaking research to save more lives and provide information and support to patients after a stem cell transplant, through its clinical nurse specialists and psychologists, who help guide patients through their recovery.
It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support.
Find out more at www.anthonynolan.org/8-ways