Young Fabulous Finn on duty to help find donors ahead of treatment

Those are the words of Jo Hill, whose seven-year-old schoolboy who was diagnosed with a rare immune system disorder.

Finley Hill, from Belbroughton, near Stourbridge, was diagnosed with familial hemophagocytic lymphohistiocytosis at only four years old, but has now found a life-saving match for stem cell treatment.

The Hagley Primary School pupil, whose condition could cause paralysis or blindness, has been given hope of a cure after a 44-year-old man from Brazil was found to be suitable.

Now the youngster is set to undergo further chemotherapy in November before the transplant.

But despite his condition Finn and his mother Jo have been carrying out “donor drives” with blood cancer charity DKMS in a bid to help raise awareness and help others.

Humbled

The two were both at Haden Cross Fire Station’s open day in Cradley Heath to help people sign up.

Jo said it was a “mixed feeling” but praised the stranger’s decision to sign up to the register.

She said:

“It’s relief mixed with fear because we’re going to the next stage. It’s obviously wonderful to have the match but, at the same time, the thought of what’s to come is scary.

“But we’re very grateful and lucky we’re in this position.

“Transplant is not an easy process and there’s a lot of ifs, buts and maybes ahead, but it’s his best chance.

“His meds are keeping him so well and it’s hard making him so poorly to potentially cure him. It’s a tricky process process and we’re so humbled that this stranger in Brazil signed up.

“But for us as a family the hardest part is beginning and that’s not easy.”

Diagnosis

A search for a donor started on April 8 by Birmingham Children’s Hospital after Finn received his diagnosis on March 1 this year.

Most babies born with the condition, known as hemophagocytic lymphohistiocytosis or HLH, become ill within the first few months. But Finn was diagnosed aged four – with the disease being isolated in his brain.

“It was a heartbreaking in one way [the diagnosis] but in one way it was a relief,” Jo said. “Actually not knowing was worse and so we then had something we could work towards positively. He’s a normal kid and that’s all he wants to be.”

Doctors warned the family that only a 10/10 match would be accepted, but now a 9/10 has been given the go ahead due to the youngster being so stable.

Finn said he was “very happy” with finding a match, which he said was “good, but scary”.

The seven-year-old will go into Birmingham Children’s Hospital on November 11, with his operation taking place one week later.

And in the meantime before the operation the Year 3 pupil will have time to look through his legions of Facebook messages, after a page set up by his family called “Finn the Fabulous” attracted thousands of visitors.

Jo, who owns the Brookfield Nurseries garden centre in Belbroughton, said the feedback had been “mind blowing”.

She said: “Customers were coming in and they were asking ‘how’s Finn?’ So we decided to set up a page so anyone who wanted to could be kept up to date.

“His name is Finn and we thought ‘what’s catchy?’ And he is fabulous, so there we are.

“There’s a lot of lovely people who are writing on there for him, praying and hoping.”

The 45-year-old added: “We did donor drives and the focus was helping to save lives and it’s been brilliant in how we’ve been able to cope. We’ve just got to get people doing it.

“It would mean everything to me if we get Finn through this and he comes out cured.

“It will be like pressing start on our lives which have been put on hold – we just want to be normal. But I’ll never stop doing this and supporting the need for awareness.”

Kam Arora, volunteer hub lead at DKMS for the Midlands, said: “It’s become a lot more personal because we’ve seen the little lad and obviously people need to understand they can be a match for anyone anywhere.”

Visit the UK Stem Cell Register via dkms.org.uk or anthonynolan.org