Joey is one of only 800 in the world to have the rare blood condition Diamond Blackfan Anaemia. His best hope of a cure is a stem cell transplant.
After a walk in a Northampton park with her 9 month old baby Joey, Kaisha Morris picked up her son and drove away. It was only later, when she got home, she realised she’d left the pram with all Joey’s things behind.
This was the least of the mother’s worries. Joey has a serious and incredibly rare blood disorder, and his best hope of a long-term cure is a bone marrow transplant from a stranger.
Social media campaign
A friend of Kaisha’s posted on the Northampton Chronicle and Echo Facebook page explaining how she was looking after her son who needed a lifesaving transplant and simply forgot the pram - her mind was clearly on more important things.
This kick-started a campaign to find a matching bone marrow donor for Joey.
‘The response was overwhelming – I just wasn’t ready for such a reaction. So many people were offering to donate prams, join the Anthony Nolan bone marrow register or donate to the charity.
It showed how much support we could potentially have, it was so motivating to know we’re not alone.’
Before he was even 8 weeks old, Joey Ziadi had been through more than most people experience in a lifetime.
Joey was born early in Northampton General Hospital via an emergency caesarean and experienced various health problems from the start of his life.
Kaisha, 35, said, ‘He was born with a hole in his heart and couldn’t open his eyes for the first two weeks.
He was just so floppy and lethargic.
We all just assumed he had problems because he was born early.’
'I just knew something was wrong'
‘I just kept on noticing little things weren’t right, there wasn’t any response from him to me.
‘He was so exhausted he wouldn’t cry for food.
I had to set my alarm on my phone to wake up to feed him.
He was like a little bird, if we didn’t feed him he would die.’
“Even though these things were brushed off by professionals, my mother’s instinct kicked in – I just knew something was wrong.’
At just five weeks old Kaisha took Joey took into A&E.
Between 5 and 8 weeks Joey’s condition took a turn for the worst.
He suffered complete heart failure and his lungs were filled with fluid.
He was in intensive care on 100% oxygen and was reliant upon a machine to keep him alive.
‘It was horrific, I just got so desperate.
No one knew what was wrong with him.
I was at the point of screaming – ‘someone look at my baby!’, when luckily a haematology consultant on the ward decided to run blood tests which led to two blood transfusions in less than 48 hours.’
When Joey received this blood transfusion, it was the first time he saw and the first time he smiled.
‘It was such an emotional moment for me.
'Before that, everything in his little body had just shut down, but it was the blood being pumped through him that gave him some life back.
'It meant the world to me just to see him open his eyes and smile.’
Rare condition
In the coming weeks, Kaisha and her partner Andrew Ziadi, 34, were tested to their limits emotionally, as doctors tried to pinpoint Joey’s condition.
The prognosis constantly changed, from the young family being told the lack of blood to Joey’s optic nerves had turned them grey, meaning potential blindness, to a letter they received from doctors diagnosing Joe with a rare neurological disorder, which meant he wouldn’t make it to two years old.
Both were later disproven.
Having undergone several tests and misdiagnosis, Joey was finally diagnosed with a condition called Diamond Blackfan Anaemia in February at 6 months old.
Doctors at first considered the condition just too rare to be possible as there are only 125 cases in the UK and just 800 in the world ever.
An incredibly small number when there are over 7 billion people alive today.
‘The phrase 1 in a million doesn’t apply to Joey, it’s more like 1 in almost 9 million,’ said Kaisha.
One professional said they hadn’t seen this in over twenty years of work.
Diamond Blackfan Anaemia (DBA) is a rare blood condition usually diagnosed before 12 weeks of age.
DBA patients fail to produce red blood cells properly and in the long term have a high-risk of complete marrow failure.
‘He’s come this far, at least we’ve got hope and we can find him a match’
‘We live in uncertainty, never quite knowing what the next blood test will show, and we’ve been told there’s a risk it could turn into leukaemia,’ said Kaisha.
‘Blood transfusions will only ever be a short term fix for Joey, and his only hope of a long term cure is a transplant.’
Joey’s four year old sister Isabella was found not to be a match so the family turned to us in the hope of finding an unrelated donor.
Joey will need a transplant in a couple of years’ time but until then the family are throwing themselves into raising awareness of the register.
‘After all that we’ve been through, when I found out Joey needed a bone marrow transplant I just thought: ‘He’s come this far, at least we’ve got hope and we can find him a match’.
‘I remember seeing a picture of the little boy Anthony Nolan and his mother Shirley in an article about the charity’s 40th anniversary.
'It really touched me back then even before I was personally affected.
'I had Anthony in my mind when I found out about Joey’s need for a transplant.
'Joey even has hair like little Anthony!’
Brad Morris, Kaisha’s brother, says: ‘I feel like we should’ve been campaigning for Anthony Nolan years ago.
'But it’s not until it’s so close to home that you truly know how important it is.’
Ann O’Leary, Head of Register Development at Anthony Nolan, says, ‘Joey’s story highlights how much we rely on the remarkable people who join our register and pledge to save a life by donating their stem cells.
'What many people don’t realise is how easy it is to join the bone marrow register – it simply involves filling in a form and providing a saliva sample.
'We urgently need more young men to sign up as they are the most likely to be chosen to donate but are under-represented on the register.’
If you're 16 - 30 and in general good health you can join the register here: