22nd May, 2019

Fabulous response as more 1,153 people signed up to stem cell register to help Belbroughton boy Finn and others

Tristan Harris 13th May, 2019 Updated: 14th May, 2019

MORE than 1,150 people signed up to the stem cell register following the appeal to find a match for Belbroughton boy Finley Hill who has the rare medical condition HLH.

And the event, through raffle, tombolas, a bouncy castle, face-painting and donations, raised £12,949 for the DKMS charity which carried out the mouth swabs and holds the stem cell register.

Residents responded to the call and flocked the two-day stem cell search at Hagley Primary School – where Finn attends – on Saturday and Sunday. The response has the potential to save over 40 lives.

The event was organised by Finn’s parents Jo and Paul who thanked everyone who went along.

Jo said: “It was a phenomenal turnout from the community and the number of people who signed up.

“When you do something like this you never know what the response is going to be like – the atmosphere was so lovely.

“I have had so many thank you messages from people who gave up their weekend – they said they loved the sense of community.

“Because of the lifesaving aspect, there was a real feelgood factor – it was so positive.”

Finn, seven, was diagnosed with HLH in March after being poorly off and on since 2016.

People who have HLH have ‘T’ and ‘NK’ immune system cells which do not work properly and become overactive – they attack the body and causing too much inflammation.

Jo and Paul were concerned while it was not known what was wrong with him but the tenacious consultant at Birmingham Children’s Hospital would not rest until she found out what was wrong.

The problem was that when it came to the symptoms of HLH Finn did not ‘tick all the boxes’.

In July 2016 he complained of headaches and was back and forth to hospital.

Then in the August he had an MRI scan in Worcester which showed a lot of swelling around his brain.

The medical staff called Jo and Paul and told them to take Finn straight to Birmingham Children’s Hospital where a neurologist and neurosurgeon would be waiting for them.

He was put on steroids introvenously and it calmed the episode which they thought was ADEM – a one-off attack.

In May of 2017 his eye completely turned inwards and the inflammation was worse, prompting another MRI scan and more steroids.

Over the next 12 months Finn had several MRI scans, a lumber puncture and an eight-and-a-half hour brain biopsy.Now he takes 20mg of steroids every other day and an immunosuppression twice a day to keep him stable but he needs a long-term solution and the stem cell transplant is the only hope he has of a potential cure.

In some cases the disease can attack all of the organs in the body and some children who are born with it die within months.His parents are not taking their circumstances for granted and are hoping a stem cell match can be found as soon as possible.

Checks on whether there is a match for Finn on the Worldwide stem cell register started on April 8 but the process takes ten weeks so Jo and Paul decided rather than sitting around doing nothing they would search closer to home.

Visit the ‘Finn the Fabulous’ Facebook page for more about the events and upcoming stem cell search events.

There is another stem cell search being held at Stourbridge Rugby Club from 5.30pm on Friday, May 17, for those who could not make it.

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