- Joey Ziadi is one of 800 people in the world with Diamond Blackfan Anaemia
- The condition prevents the body from producing red blood cells
- As a result the one-year-old’s organs do not receive the oxygen they need
- Little Joey has to have blood transfusions every three weeks to survive
- But his parents Kaisha Morris and Andrew Ziadi said they are only a short-term option with doctors fearing he will suffer bone marrow failure
- Joey needs a bone marrow transplant but none of his family are a match
- His parents are urging people to sign the Anthony Nolan donation register
- Ms Morris, said: ‘We live in uncertainty, never quite knowing what the next blood test will show’
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By the time Joey Ziadi was eight weeks old he had already suffered complete heart failure.
The tiny newborn was diagnosed with an extremely rare condition, which prevents his body from producing red blood cells.
Diamond Blackfan Anaemia (DBA) affects just 800 people across the world – 125 in the UK.
Little Joey’s only hope to prevent long-term damage is a bone marrow transplant, but until then the toddler has to face blood transfusions every three weeks.
One-year-old Joey Ziadi was diagnosed with the extremely rare Diamond Blackfan Anaemia, which prevents his body from producing red blood cells, which supply the organs with oxygen
Little Joey, pictured with his mother Kaisha Morris, faces blood transfusions every three weeks, to ensure his body gets the oxygen it requires to survive
The procedure ensures oxygen can get to Joey’s vital organs, as his body is unable to perform the vital function.
His mother Kaisha Morris, from Northampton, said the regular transfusions are keeping her son alive.
The 35-year-old, said: ‘It’s difficult having to take him for transfusions every week because it must be so uncomfortable for him.
‘They’re an absolute life-saver for him though.
‘Before his first one when he was eight-weeks-old he hadn’t ever opened his eyes or smiled before.
‘He was just this floppy, lethargic little boy.’
DBA means Joey suffers a lack of red blood cells, and as a result no oxygen reaches his organs.
The condition has left the one-year-old almost blind as his optic nerves received no stimulation.
As a newborn he was so weak and exhausted he couldn’t even cry for food, leaving his mother to set alarms to remind her to feed him.
Doctors were unable to diagnose Joey with DBA until a haematology consultant ran blood tests at eight weeks, leading to two transfusions in two days.
Ms Morris said: ‘It meant the world to me just to see him smile.
‘Before the transfusions everything in his body had shut down but the oxygenated blood finally breathed some life into him.
Joey was diagnosed with the condition, which affects 125 people in the UK and 800 across the world, when he was eight weeks old
His mother Ms Mills and father Andrew Ziadi have been told the transfusions are only a short-term answer to his condition. Joey needs a bone marrow transplant if he is to avoid long-term damage
Joey’s parents are urging people to sign the Anthony Nolan donation register after no one in their family was found to be a match for their son
‘Before that I was so desperate I almost screamed “someone look at my babyâ€.’
Even after his first transfusions, Ms Morris and Joey’s father Andrew Ziadi, 34, had to wait an agonising four months before doctors could formally diagnose their son’s condition.
WHAT IS DBA?
Diamond Blackfan Anaemia is a rare blood disorder, characterised by the failure of the bone marrow to produce red blood cells.
That failure causes patients to become severely anaemic.
Most sufferers are diagnosed in the first year of life and can live long and healthy lives if they receive appropriate medical treatment.
The most common forms of treatment are blood transfusions and in some cases stem cell transplants, or bone marrow transplants are required.
Source: Diamond Blackfan Anaemia Foundation
The couple have been told the transfusions are only a short-term option, with doctors concerned Joey will suffer complete bone marrow failure.
No family members have been found to be a match for Joey, prompting his parents to turn to the charity Anthony Nolan for help.
Ms Morris, said: ‘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 of a match.
‘Transfusions will only ever be a short-term fix and his only hope of a long term cure is a transplant.
‘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.’
Ann O’Leary, Head of Register Development at Anthony Nolan, said: ‘Joey’s story highlights how much we rely on the remarkable people who pledge to save a life by donating their stem cells.
‘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.’
To join the Anthony Nolan register, you must be aged between 16 and 30, and be in general good health. To sign up online visit the charity’s website here.
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