A STEM cell seeking session will be held from 9am to 4pm at Hagley Primary School on Saturday and Sunday, May 11 and 12, to try and find a match for a Belbroughton boy with a rare medical condition.
Finley Hill 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.
His parents Jo and Paul Hill 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.
Although Finn goes to school at Hagley Primary and goes out with friends his situation means he cannot live his life to the full.
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.
As well as the stem cell search, which involves a simple mouth swab, there will also be a raffle and fund-raising activities at the two events for DKMS which takes the samples and holds the register.
It costs nothing for the volunteers to have the swab done but it costs the charity £40 per person.
Jo said: “Because of the cost, we wanted to give something back.”
As well as individuals putting themselves forward, large companies can also volunteer their employees to be tested and DKMS will visit the firms to carry out the tests.
The process itself of donating stem cells is also not invasive and similar to giving blood – the blood is taken in the same way as a donation would be, the cells are harvested and then the blood is put back in the donor.
A normal healthy person can make the cells back up in a few weeks.
The Anthony Nolan Trust insists on generally healthy people being aged between 16 and 30 to donate but with DKNS the ages are 17 to 55.
Visit the ‘Finn the Fabulous’ Facebook page for more about the events.