“Because of research, he's a happy, healthy toddler”- Meet Arlo

29 Feb 2024, 2:53 p.m.

Arlo sitting on hospital bed and smiling to camera

When Arlo was four months old, he was diagnosed with severe combined immunodeficiency (SCID). SCID is a rare, inherited disorder that causes major abnormalities of the immune system, leading to greatly increased risks of infection and other life-threatening complications.

In December 2019, he was one of five children to have gene therapy as part of a clinical trial run by Dr Claire Booth at GOSH.

Now four years old, he’s doing well and loves going to school and riding his bike. His mum Michaela shares their story.

Finding out Arlo had SCID

“Arlo was two days old when we first noticed something quite serious.

“We were at home, discharged from hospital, when he went very floppy and blue. We called an ambulance, got to A&E and miraculously he was completely fine.

“After that, we had continuous problems. He'd have oral thrush, and despite different types of medication it just wouldn't go.

“He constantly had fevers, which Calpol or paracetamol wouldn't shift.

“Arlo was in and out of A&E or the doctor's surgery once or twice a week.

"When he was about four months old, we came home and he just looked really poorly. It was fever or thrush, and he had a rash or something over his body. So it was back to A&E.

“That evening was when things became real. A doctor offered a blood test, which came back a bit all over the place. They did an extended panel of bloods.

“At that stage we were told it seemed as though Arlo had some sort of severe combined immunodeficiency (SCID).

“We had no idea what an immune deficiency was, how it would affect Arlo, or our life, or what treatment would involve. It was a really scary, dark time."

Coming to GOSH

“Two days later we arrived at GOSH. We met Dr Claire Booth and an Immunology/Gene Therapy Specialist Nurse. They briefly explained what SCID was and that they’d have to do further bloods to determine what type Arlo had.

“I felt very safe walking into Great Ormond Street. It's a very calm environment, which allows you to feel a little bit calmer yourself.

“This is a hospital with the sickest children, this is where people come to get the best treatment.

“We were told that Arlo had the X-linked type of SCID. SCID is an immune deficiency where you don't have the infection-fighting cells to fight off a typical cold. The type of SCID that Arlo has is almost like 'bubble-boy syndrome'. If you're living in a bubble which is sterile and clean, there's no risk of infection, but on the outside, everything is infectious to you, everything is dangerous. And so, in Arlo's case, something like a cold can be life-threatening."

Undergoing a gene therapy clinical trial

“When Arlo got his diagnosis, the treatment options that we were given were a bone marrow transplant or gene therapy through a clinical trial.

“Gene therapy was not something that was familiar to us. We had never actually heard about it before, we had no idea what it would entail.

“We weren't sure if he would respond well to it – there was no evidence to say that he would, there was no evidence to say that he wouldn't.

“For us, gene therapy, despite not knowing if it would be successful, seemed like the better option.

“Gene therapy is essentially cells which are taken out of your body and modified in the lab and then put back into your body.

“Those cells will gradually begin to produce and reproduce their own cells, so that eventually Arlo would have a healthy amount of cells in his body, like an average toddler. That would allow him to be able to fight off infections, just like any other person.

“Arlo’s trial began the end of December 2019. His 'magic cell day' – the actual transplant day – was 30 January 2020.

“The day of his transplant was so surreal. This is going to cure you – and it's just this little bag of medicine which really smelt of sweetcorn! That was probably one of the best days that we had. And then it was just hoping and praying that everything would follow through and work.”

Arlo looking out of the window from room at GOSH

Staying at GOSH for two weeks post-transplant

“Post-transplant, we were on edge all day, every day, looking out for a fever.

“There were many highs, many lows, it felt like a lifetime within those two weeks. It was a really challenging time.

“The care we received at GOSH is just second to none. The nurses are so understanding, they see children like this day in, day out. And having nurses with that sort of experience really allowed us to feel calmer, more at peace, reassured.

“l stayed in hospital with Arlo, whilst his dad, Richie, would sometimes stay in the family accommodation.

“I’m really thankful for all of the nurses on Fox ward and the Play team and volunteers. We couldn't take Arlo out anywhere, he was confined to one room for the duration of his stay, and the Play team was there to break up your day a little bit.

“They were incredible, making prints with his hands, bringing in messy but clean play and different toys to help Arlo cognitively function as he should for a baby at his age. We did a lot of fun things, building towers, books, music – they come in and play guitars and stuff.

“A couple of weeks after his transplant, we were able go home."

Ongoing treatment

“Post-transplant, we were adjusting to life at home with Arlo, but it was the beginning of COVID. We were so scared about Arlo socialising with other people as he had just had chemotherapy, he was immune suppressed. So we were confined to our living room for a while.

“After about four or five months we saw a huge improvement with Arlo. But I think really it was a year or so after his transplant that he wasn’t getting sick anymore and was able to do ‘normal’ things, like go to a park, go to soft play, or go shopping without feeling the need to protect him with a rain-cover to stop germs.

“After his transplant, Arlo was having check-ups every month, then every three months, and then every six months and now it's every year.

“He's thankfully only on one medication now, twice a day, and that will be it for the rest of his life."

Importance of research

“We are incredibly lucky that Arlo was diagnosed quite early, in the sense that it gave him a fighting chance of surviving and responding well to treatment.

“Jinhua and Dr Claire Booth, who do such an amazing job with the research, have essentially saved Arlo's life, and it's something we will always be thankful for.

“Research is beneficial in so many ways. It helps new ideas progress, it allows people to experiment in different ways with different medications and treatments and it can really make a difference to a lot of people's lives.

“Clinical trials are incredibly important. Whatever they can do to allow children to go through this journey without as much pain and suffering is really beneficial, it’s in everyone's interest.

“I think it's important that people support research at GOSH, it gives us so many more treatment options compared to what we used to have.

“Because of research, Arlo is happy and healthy, and that is always what we wanted for our child. Without research, we don't have options."

Watch Arlo's story

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Every child deserves a breakthrough.

Here at GOSH Charity, we're the UK’s largest dedicated funder of child health research. We believe it is our role to accelerate child health research and provide hope of a better future for seriously ill children through research-led care.

Whether it’s a new treatment for an incurable disease, a kinder way to diagnose a condition without the need for surgery, or a way to minimise the side effects of treatment – so that more children can have the childhoods they deserve and thrive into adulthood. We believe that every child deserves a breakthrough.

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