A Harrogate three-year-old who has an extremely rare life-threatening condition affecting just 125 people in the UK, has become an inspirational figurehead for fundraising and driving vital awareness across the country.
Archie Flintoft has to have a blood transfusion every three weeks in order to stay alive, and despite the unrelenting adversity he faces living with Diamond Blackfan Anaemia, he’s always smiling and helps his mum and dad to raise funds for DBA UK - a charity that supports families affected by the illness, where bone marrow fails to produce red blood cells.
And now, Harrogate residents are being invited to show their support for one of the Bilton family’s biggest fundraising events yet on March 17 - hosted by Harrogate Town AFC, a charity football match will see Emmerdale stars taking on members of Harrogate Town Supporters Football Club, with kick-off at 2pm and a post-match auction.
Archie’s parents launched a group called Archie’s Army to organise events for DBA UK, and the game at Harrogate Town is their latest fundraising drive.
Archie’s mum Vicky said: “The support for Archie’s Army and DBA UK has been amazing, it’s been more than I could ever have hoped for. It’s picked me up, and made us feel so supported.
“We are fighting together to make Archie’s future better, and the future of all children who have the condition. To know that there are people supporting us and rooting for us means so much - you feel stronger when you know people care.
“I have had some of the worst times in my whole life over the last three years, but I’ve also had some of the best times. Archie makes me strong.”
When Archie Flintoft was taken to the doctors at 10 weeks old, mum Vicky thought he would just be given some medication then be sent on his way.
What she wasn’t prepared for was the realisation that her little boy has a rare life-threatening condition that means he must have a blood transfusion every three weeks in order to stay alive.
Now three years old, Archie is full of life, and has even been likened to the Tasmanian devil - he’s bursting with energy, and has a cheeky smile that’s totally infectious.
He’s the sweetest boy you could meet in Harrogate, but he’s still wary of strangers - after all, he’s only too used to having to be prodded with needles and going through endless rounds of treatment from people he doesn’t know.
To look at Archie, he’s a normal three-year-old, but his struggle with Diamond Blackfan Anaemia (DBA) is an invisible and painful one. He has to have the regular blood transfusions because his bone marrow fails to produce red blood cells. But this can lead to a build-up of iron in his body that could prove fatal if it isn’t treated.
To control this, Archie has to have a needle inserted into his leg five nights a week, which is attached to a pump that gives him medication while he sleeps.
It’s an extremely painful process, and on top of this, Archie has developed Adrenal Insufficiency as a result of the steroid therapy he has received. It’s a secondary life-threatening condition, and means that Archie is also dependent on steroids just to stay alive.
Being a rare condition, Diamond Blackfan Anaemia can feel very isolating for the children and families going through it. But thanks to Archie’s parents, the Harrogate district now has an important support network for DBA, called Archie’s Army.
The group raises funds for DBA UK, which provides vital support for families across the country. Their fundraising target is £10,000, and more than £6,000 has already been secured thanks to a number of events and gestures from big-hearted supporters in Harrogate.
Archie’s mum Vicky said the sense of community that’s been created through Archie’s Army has been a lifeline. She said: “The support for Archie’s Army and DBA UK has been amazing, it’s been more than I could ever have hoped for. It’s picked me up, and made us feel so supported. We are fighting together to make Archie’s future better, and the future of all children who have the condition.
"To know that there are people supporting us and rooting for us means so much - you feel stronger when you know people care. We would like to thank everybody in the local community who has supported us.
“We don’t know what the future holds for Archie - the condition is so rare, and you don’t know what’s going to happen. But we just have to take each day as it comes, it’s been a rollercoaster.”
It’s not just the amazing support from the Harrogate community that’s kept Vicky and her family going - above all, it’s been Archie himself.
She said: “There has been times when I have felt really quite depressed by it all. But when I think about what Archie has to go through, I think, what have I got to complain about? I have had some of the worst times in my whole life over the last three years, but I’ve also had some of the best times. I am pretty sure that there will be moments in the future where we will sink down to the bottom again, but we will be strong - Archie makes me strong.
“He is so resilient - he goes through so much, but he doesn’t let any of it phase him. He doesn’t even bat an eyelid anymore when he has to have things done, he just takes it all in his stride.”
While the Harrogate community has been very supportive of Archie, Vicky is aware that there can still be something of a stigma around invisible illnesses.
She said: “Some people, if they can’t physically see something, they don’t think there’s anything wrong with you. But nobody knows what battles people are fighting, nobody knows what’s happening in someone’s life, so it’s important to just take a minute, be kind to people, and don’t judge them, because there might be a reason why someone is behaving in a certain way.”
How you can help, and upcoming fundraising events
Every penny raised by Archie’s Army is ploughed into supporting DBA UK, the Diamond Blackfan Anaemia charity. Archie’s parents, friends and supporters have been organising a number of events for DBA UK through Archie’s Army, and in just over a week’s time, Harrogate residents will be treated to another exciting fundraiser.
Harrogate Town AFC is hosting a charity football match to support Archie’s Army, where a team of Emmerdale stars will take on members of the Harrogate Town Supporters Football Club.
The game kicks off at the CNG Stadium on March 17, at 2pm. A post-match auction and raffle inside the stadium’s 1919 venue will be one of the big highlights of the event, with signed football shirts and a signed Emmerdale script among the prizes up for grabs.
Archie’s family are still looking for some more raffle prizes. If you think you can help with this, email Vicky7782@hotmail.co.uk, or message the Archie’s Army Facebook page.
A JustGiving page has also been set up for Archie’s Army to raise funds for DBA UK - visit www.justgiving.com and search for Archie’s Army DBA to make a donation, or find out more about the cause.
DBA: The facts
- The condition is very rare, with only around 125 cases in the UK.
- DBA usually presents within the first two years of life, but some cases present much later.
- The condition has symptoms in common with all types of anaemia: paleness, irregular heartbeat and heart murmurs due to the increase in work the heart needs to do to keep oxygen moving around the body. This can lead to irritability, tiredness, and fainting. Since DBA is diagnosed at a very early age, it is difficult for children to tell their parents how they are feeling. Parents usually notice that something is wrong well before diagnosis.
- In a third of cases there are related physical defects, including thumb, kidney and facial abnormalities, but in others there are no physical signs. Many affected children are short for their age, and may have delayed puberty.
- There is rarely a cure - some individuals will have a spontaneous remission in which the red cell production switches back on, but this is uncommon, and is impossible to predict.
- Research into the cause of DBA and other related bone marrow failures is being carried out at several centres internationally. In the UK, this takes place at St Mary’s Hospital in London.
- Little is known about the condition because it is so rare. Research has shown a genetic link in 25 per cent of cases relating to the RPS19 gene and also collectively in 30 per cent of cases in genes RPL5, RPS10, RPL11, RPL35a, RPS26, RPS24, RPS7, RPS17 and RPL26. Research is still ongoing to discover other genetic links. DBA is not caused by an iron deficiency.
Archie Flintoft has won the hearts of our district with his cheeky smile and infectiously positive attitude towards life - despite living with a rare life-threatening condition, nothing phases him, and, remarkably, he’s helping other children who are going through the same thing by stepping up to become a figurehead for fundraising.
Archie has galvanised Harrogate residents to raise awareness of Diamond Blackfan Anaemia, and it has been truly heartwarming to see the overwhelming response to his story - it’s really struck a chord.
Archie’s Army seems a very appropriate name for the fundraising drive that’s been set up in his name, as together we are far stronger.
With this in mind, we hope that as many people as possible turn out and attend the charity football match at Harrogate Town AFC on March 17 to show their support for Archie, and all the other brave children across the UK who are battling invisible illnesses.