The rare disease that means little Evie is given new blood every 5 weeks

Evie Campbell.
Evie Campbell.

AN Alnwick baby has to undergo a blood transfusion every five weeks due to an extremely rare condition, which affects only 600 people worldwide.

Evie Campbell is seven months old and has already had five transfusions since she 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.

Her mum, 29-year-old Rebecca Hole, said: “Blood is something we all expect to be there when we need it yet only four per cent of people in the UK give blood.

“If it wasn’t for the generosity of donors, Evie wouldn’t be alive today.”

Rebecca described how at eight weeks old Evie became poorly and very, very pale.

The couple took her to the doctors and were told to go straight to the RVI in Newcastle where she was diagnosed with DBA.

“Since then we have been going back every five weeks for a transfusion,” she said.

“The new cells live for about four weeks, then she starts to get very tired and loses her appetite.

“She is on a trial of steroids, which make her body produce red blood cells.

“Fingers crossed her body will take to them, but she’s too young to be on them really so it’s just a trial for now.”

Another possibility for the future is that Evie will have to undergo a bone marrow transplant.

And regular blood transfusions are quite a strain for young Evie, and her parents.

Rebecca said: “Every day we think about it, knowing she’s going to have it. It’s a big ordeal.

“It’s often difficult finding a vein, but once it’s in and the blood’s arrived, it’s just a relief when it’s over to know we have five weeks.

“It’s a long day as well, last time we got there at 9.30am and didn’t get home until half-midnight.

“Despite that she’s a very happy and smiley baby.

“She lives a very normal life and she’s such a smiley, happy baby. She’s just a bundle of joy.”

Evie’s dad Richie, a member of Alnmouth Village Golf Club, is taking on a marathon golf challenge to raise awareness and funds.

He is organising a sponsored 1000-holes-in-one-day event this summer.

The 30-year-old joiner, along with nine other members and close friends, will be teeing off at 4am on Saturday, July 7, and playing 100 holes each, aiming to be finshed by 10pm.

The day, which will also feature a coffee morning at 10am, will raise funds for DBA-UK, the charity which supports those with the condition, as well as trying to encourage people to become blood donors, as Evie is life-dependent on blood.

The couple aren’t sure what to expect from the sponsored challenge and coffee morning.

“It’s going to be a big test of their golf skills and a long day,” Rebecca said.

“It’s the first year we are doing it.

“If we raised £1,500 we would be over the moon, but it’s more to raise awareness and get people to give blood.”

l To sponsor the golfers on their 1000-hole challenge, visit