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Our happy little boy will die without a stem cell transplant but we can’t find a match… we’re desperate


WITHOUT the help of a stranger, little Finn Hill’s future hangs in the balance.

The seven-year-old, nicknamed Finn the Fabulous, is just one of a handful of people worldwide with a rare condition that makes his brain dangerously swell.

Without a stem cell transplant, little Finn Hill’s future hangs in the balance
Belfast News & Features
The seven-year-old is one of a handful of people across the world who suffers a rare condition that makes his brain dangerously swell
Belfast News & Features

His illness is being kept at bay with steroids, but doctors have told his worried parents, Jo and Paul Hill, that his only hope of long-term survival is a stem cell transplant.

Now, the family from Belbroughton, in Worcs. are campaigning to get more people to sign the stem cell donor register – in the hope they might find a match for Finn, and thousands of others currently waiting too.

“Finn is a bright and happy little boy – to look at him you wouldn’t believe he was so ill,” mum Jo, 44, told The Sun.

“He loves Harry Potter, Captain Underpants and playing pretend.

“He likes to dress up as a doctor, waiter or teacher. He’s stuck a calculator to his bedroom door and swipes himself in and out with an old lanyard!

“He’s full of fun, but without a stem cell transplant, our little boy has no future.

“Just 2 per cent of the UK population are registered as donors, but there are currently around 80,000 people waiting for life-saving transplants.”

Finn’s problems first started when he was four years old, he had been a healthy, happy baby until that point, mum Jo said
Belfast News & Features
But one day Finn started to complain of headaches, odd for a four-year-old his mum noted
Belfast News & Features

Finn’s problems began when, aged four, he came home from the last day of pre-school with a terrible headache.

“I remember thinking it was unusual when he said ‘Mummy my head hurts’,” said Jo. “It’s not often young kids get headaches.”

At first their GP put it down to a virus, but the following week Finn was referred to their local hospital for blood tests and a brain scan.

The results seemed normal, and Finn was sent home with antibiotics, but the scans were sent to Birmingham Children’s Hospital for a second review, just as a precaution.

“A couple of weeks later I was in my bedroom packing,” said Jo. “It was August 2016 and we were due to fly out to Ibiza on holiday.

We were absolutely stunned when the doctors told us there were only four known cases in the world of HLH starting in the brain


Mum, Jo Hill

“The phone rang and it was the hospital. It was the most bizarre conversation I’ve ever had.

“They literally asked ‘is Finn pink and breathing?’ I was stunned.
“He loves dressing up, he was downstairs with a white coat on, pretending to be a doctor!

“They told me to get him in the car and get him to the children’s hospital immediately, where a team would be waiting.

“They wouldn’t say any more… it was terrifying. But when I asked if I should pack a bag, they told me I didn’t have time.

“Paul and I just grabbed Finn and ran for the car.”

After taking Finn to the GP he was referred for scans at hospital
Belfast News & Features
Weeks later, just before Jo and Paul were due to take Finn on holiday, they got a panicked call from the hospital, asking if their son was ‘pink and breathing’
Belfast News & Features

In hospital, Jo and Paul, who run their own garden centre business, were told that Finn had swelling on his brain.

He was hooked to an IV and given steroids immediately to reduce it.

Five weeks later he was sent home. But as soon as the drugs were reduced, it happened again.

“I’d taken him swimming after school, and we were eating fish and chips, when suddenly I noticed his eye was turning in,” said Jo.

“’Stop that with your eye Finn!’ I told him, but he said he wasn’t doing anything.

“It was rolling into the back of his head, it looked horrible. We went straight back to A&E.”

For almost a year, Finn was in and out of hospital. Every time his steroid dose was reduced, he fell ill with headaches as his brain swelled dangerously.

Finn, who loves to dress up and pretend he’s a doctor, was diagnosed with a condition so rare there are only a handful of cases recognised across the world
Belfast News & Features
While his condition is currently being managed by steroids, his only hope long-term is a stem cell transplant
Belfast News & Features

The little boy endured countless scans and lumbar punctures as medics desperately tried to find a cause.

Eventually, in August 2017, Finn was diagnosed with Clippers Disease, a condition so rare that there are only around 60-70 known cases worldwide.

Then, following genetic testing at London’s Great Ormond Street Hospital in January 2018, that diagnosis was updated to Hemophagocytic Lymphohistiocytosis (HLH) – a condition which causes the body to make too many active immune cells, causing too much inflammation, which damages the patient’s tissues and organs.

“We were absolutely stunned when the doctors told us there were only four known cases in the world of HLH starting in the brain,” said Jo.

Finn’s rare illness can only be treated with a stem cell transplant, so he is currently on the waiting list.

His condition is being controlled by steroids, but eventually he will deteriorate.

“Finn being Finn, he’s also a rare tissue type, so it’s going to be hard to find a match,” said Jo.

DONATING STEM CELLS & SIGNING THE REGISTER

  • When you join a stem cell registry you are on standby to be matched and potentially save a life – although many people are never called up.

  • Blood stem cells can be collected in one of two ways.

  • The first, used in around 90% of cases, is a similar process to giving blood. Blood is taken from one arm, run through a machine which collects the stem cells, then returned to the body through the other arm. The body typically replenishes the stem cells within 2-4 weeks.

  • The second involves taking blood stem cells from bone marrow at the back of the hip bone. It is a small operation carried out under general anaesthetic, and most donors are back to normal activities with a week.

  • You can register as a donor by using a simple tissue swab kit, sent to you in the post. You take swabs from the inside of your cheek.

  • For more information visit www.dkms.org.uk or www.anthonynolan.org.

 



“We’ve now launched a campaign, called Finn the Fabulous, to raise awareness of the blood stem cell donor register.

“It’s so easy to sign up, if you’re aged 16-30 you can do it via the Anthony Nolan Trust website, or if you’re aged 17-55 you can request a simple swab kit from DKMS.org.

“We know all about giving blood or donating organs, but donating stem cells is often overlooked, and it could save so many lives.”


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