Arlo’s Army: mum opens up on heartbreaking decision to make 3-year-old sick to save his life – Glasgow Live

Little Arlo McArthur has spent his short life fighting.

No one knows better than his mum Nicole just how tough this little warrior is.

Diagnosed with a deadly blood disorder at just 10 weeks old, the three-year-old desperately needs a stem cell transplant to save his life.

And as the campaign to encourage males between 16 and 30 to volunteer to be tested to see if they are a match gathers pace, Nicole has opened up in heartbreaking detail about the harrowing battle to save Arlo.

She told Glasgow Live: "This is every parents worst nightmare. I cannot lose my son. We have such a fight ahead of us.

"He's doing really well at the moment but it's really scary looking at him, knowing he is so vulnerable. It hurts us so much."

It was only two weeks after bringing their baby boy home in 2017 that Nicole and husband Ian discovered something was wrong with him.

"We rushed him to A&E after he vomited a blood clot." Nicole recalls. "Doctors initially diagnosed a severe cows milk allergy and sent us home. Later he vomited again, and we found blood in his poo so we returned.

"It was suggested that it may be leukaemia as his platelets were so low. When they said that, I knew there was something deeply wrong. After that was ruled out, we waited ten more weeks for answers.

This was the point that I realised that doctors were only human, they are not God. They dont know everything: Its about eliminating all of these possibilities until they get to what it is. It was tough.

The Milngavie family spent weeks agonising in the dark and were offered leaflets on living without a diagnosis but kept in touch with medics.

One doctor mentioned that she thought his symptoms matched up with a rare condition, but did not want to define it to Nicole until the test results were confirmed.

After asking another member of staff, the sickened mum discovered they were testing her baby for Wiskott Aldrich Syndrome.

She said: "I Googled it when I got home and I was utterly traumatised to learn that the life expectancy for a child with this condition was five. I was beside myself.

"My friends and family were saying dont be silly and stay positive. I was praying and hoping it wasnt, but I knew in my gut it was what Arlo had."

Nicola steeled herself for the worst, but nothing could have prepared her for the moment she was given the bad news at the hospital. She broke down before the doctor had finished delivering the diagnosis.

Worse still, she was alone as her husband was unable to take any more time off work.

I was complete mess I was in full crazy mode, crying. I had to deliver the news to my husband over the phone. I never imagined it would be like this," she said.

The doctor tried to calm me down and said we could get him a bone marrow transplant. I didnt even know what that was before then.

Wiskott Aldrich Syndrome is a rare genetic immunodeficiency disease that keeps a child's immune system from functioning properly. It also makes it difficult for a child's bone marrow to produce platelets, making them prone to bleeding.

Its estimated there are between 1 and 10 cases per million males worldwide. Arlo was only the third case at Queen Elizabeth University Hospital.

A 10/10 donor match was found for him on December 22 the best Christmas present ever and shipped over from the US. The family battled to have it transported to Scotland from Heathrow in an Uber after flights were grounded during a snow storm.

The baby's transplant was successful, and the cells were engrafting. But that started to change, and his engraftment started to drop with each check in.

He also contracted severe sepsis and began suffering from seizures and it emerged entophilitis, a form of meningitis, had entered his brain. His neck lolled and his eyes danced around. He was taken into intensive care after being discharged.

We thought he might have had brain damage. It sounds terrible but we were accepting of that. Well take anything as long as hes with us. Well deal with what we have to. We just wanted him to live. Thankfully the symptoms resolved themselves.

If he didnt have that within six months, he wouldnt have made it to his first birthday. He was very, very sick.

Arlo urgently needs to find a young, male, donor aged 16-30. His back-up is his dad, who is a half-match.

Nicole explains that the success rate is higher for children under five in a healthier condition. When they find the match, the toddler will have to undergo high-dose chemotherapy to break down his immune system to allow the transplant to take place. He last had this when he was six months old.

One nurse described it to me as taking the body as close to death as they possibly can and rebuilding it. Its really harsh on the body its basically a poison," she said.

He really wasnt well the first time and he ended up on morphine for the pain. He had mucositis all the way from his throat to his gut and had to be fed through a tube to bypass his stomach. It was horrible.

"But if he doesnt do this as soon as he can, his immune system wont be able to withstand it. He could be at risk of leukaemia. I know hes a ticking time-bomb.

While doctors are hopeful that the next transplant will help Arlo, they warned the family to brace themselves for it not working out again. The mortality rate for a transplant is also around 20 per cent but Nicole said its a risk the family is willing to take to give their boy his best chance.

She said: The doctors do speak to you and say You do know if we dont get the result youre looking for things can go wrong. You have to sign paperwork to confirm that you know this could result in death.

So much can happen. You could undergo a transplant to fix one thing, and come out with another.

Once I played devils advocate and asked the doctor what Arlos life would be like if we chose not to take the transplant.

"He told me that Arlo would have a poor quality of life and they could possibly get him to his teenage years, maybe even his late teens. But it 'wouldnt be a nice way to live.' I said thats not an alternative. "

She added: To make him sick and risk his life to make him better all at the same time is heartbreaking. But theres that chance he could live a better life and thats what we are fighting for.

If we lose Arlo in the process, we know that we have done everything in our power to give him a normal life that we possibly can. That's in God's hands. It is our only option.

To find out how you can can join the register and help the fight to save little Arlo and others just like visit Anthony Nolan's website here.

Follow this link:
Arlo's Army: mum opens up on heartbreaking decision to make 3-year-old sick to save his life - Glasgow Live

Related Post