The search is on for a donor for a five-year-old girl with an extremely rare condition who will need a bone-marrow transplant within two years.
Evie Campbell, who lives in Shilbottle, was diagnosed with Diamond-Blackfan anaemia (DBA) at the age of eight weeks.
The condition, caused by a failure in the bone marrow and characterised by an inability to produce red blood cells, affects only around 125 people in the UK. It requires intensive therapy and has no known cure.
The Gazette first reported on little Evie in May 2012 when, aged just seven months, she had already undergone five blood transfusions.
She had also started a steroids trial, with the hope that they would make her body produce the vital red blood cells, but they have failed and Evie is now back on the cycle of four-weekly transfusions. Despite only turning five in September, she is already on number 21.
The youngster has her blood tests and transfusions at the RVI in Newcastle, but is under the care of St Mary’s Hospital in Paddington, London – the UK’s specialist centre for DBA.
It was there in August that Evie’s parents, Rebecca and Richie, were told that she needs to have a bone-marrow transplant in the next two years.
The transfusions mean that Evie has a severe iron overload, so she has medicine for that, which has side-effects and gives her a bad tummy, while she also has a weak immune system and relies on medicine for that too.
Plus, after her transfusions, she has two really good weeks before starting to go downhill – ‘but she manages so well’, says mum Rebecca. “She knows she has special blood that doesn’t work properly.
“She looks like a normal five-year-old, but inside she’s battling a very rare blood disorder; there’s about 130 cases in the UK.
“A life-saving transplant is going to allow her to live the healthy childhood she deserves.”
But despite all this going on, ‘Evie takes it all in her stride and never complains, she’s such a happy little girl,’ according to Rebecca.
And this includes at Swansfield Park Primary School, where Rebecca says everyone has been ‘amazing’. In particular, they are grateful to Evie’s teacher, Mrs Threlfall, who is very good at explaining it all to the other children.
She is also ‘such a good big sister’ to Erin, 20 months, the latest addition to the family, but not a match to Evie in terms of donating bone marrow.
The Anthony Nolan register is being searched in the hope of finding a donor and to this end, the charity is coming to Alnwick to run a recruitment event at the start of next month.
The current recruitment focus is on young people aged 16 to 30 and, in particular, young men, because they currently account for more than half of all donations each year, but only make up 13 per cent of the register.
As many people as possible are encouraged to attend the event at Swansfield Park Primary School on Saturday, December 3, from 11am to 3pm.
All it requires of a potential donor is to read through the information pack, fill out the medical application form, have it checked by an Anthony Nolan representative and then give a small saliva sample.
The family has launched a new bid to raise £10,000 to support Evie’s bone-marrow transplant journey, paying for the likes of travel, accommodation and childcare costs during the process, with events planned for the coming weeks.
‘Fantastic support and generosity’
Further events are taking place this weekend, while the fund-raising for Evie’s bone-marrow transplant journey is already halfway to its target.
The Campbells want to raise £10,000 to help cover the costs as Evie prepares for her transplant.
At tomorrow night’s Christmas lights switch-on in Alnwick Market Place, they will be in the Town Hall from 6pm. Admission is £1 and there will be hot drinks, biscuits and cakes, while Captured Moments Wedding Photography will be taking pictures – perfect for Christmas gifts.
On Saturday, The Pantry is hosting a Christmas Fair at the Old Post Office in Alnwick (former council chamber), from 10am to 3pm. The fund has a stall there with the likes of a tombola, guess the name of the teddy and guess the number of sweets in the jar.
Finally, on Friday, December 23, bag-packing will be taking place in the Morrisons store in Alnwick.
Anything raised will be added to the £2,000 donated by Alnwick Round Table at its annual fireworks night and the £3,000 raised at a fun day at the Shoulder of Mutton pub in Longhorsley.
The fun day was an event of two halves. The afternoon, targeted at families, included face-painting, tattoos, hot dogs, cupcakes, a magic show from Magic Mick and even a guest appearance from Boxer the pony.
In the evening, adults were entertained by two live bands – Burnie and the Blue Notes, from Durham, and The Klassics, from Blyth, alongside a hog roast.
Evie’s mum Rebecca said: “Richie and I are overwhelmed with how the local community is helping to raise funds and awareness of Evie’s journey. The support and generosity of people has been fantastic.”
Other ways to support cause
Even if you can’t attend any of the events, there are still a number of ways you can support Evie and the Campbell family and donate to the cause.
A crowdfunding page has been set up as part of the efforts to raise £10,000 to support Evie’s bone-marrow transplant journey – www.justgiving.com/crowdfunding/EvieCamp bellFund
You can also follow her progress via her Facebook page – Evie’s DBA Journey.
Cheques payable to The Evie Campbell Fund can be sent to The Evie Campbell Fund, c/o 44 Kippy Law, Seahouses, NE68 7YH.
Or to make a donation via bank transfer, use the account number 33573419 and the sort code 20-58-17.
To find out more and to donate online via Paypal, visit Evie’s website – www.eviecampbell.co.uk