THESE are the two boys who have made medical history by becoming the first twins in the world to have
both their lives saved by a pioneering transplant from their father.
Alex and Oscar Chan were just six months old when they were diagnosed with Wiskott-Aldrich syndrome
- an rare lifethreatening immune system disorder that affects just four in a million children.
In a race against time, their parents Alan and Tanya Chan appealed worldwide for a bone marrow donor
to save their sons’ lives.
Tiny Alex was given just months to live without a transplant and for him the future looked bleak.
Despite the worldwide appeal in October 1999, no suitable match was found.
So in a high risk operation, doctors decided to perform a transplant using cells from their father, a
biologist, to transplant into the first twin, Alex.
Alex then donated bone marrow to try and save his twin brother Oscar too in a ‘passage’ transplant from
twin to twin - a process which had never before been done in the world.
Luckily the unique transplants have paid off and both boys have now recovered at home - a miracle that
doctors say they never expected.
Speaking from the family home in South Ruislip, West London, Mr Chan, 40, said: ‘We thought both our
boys were going to die. I’m just so relieved I was able to give them both a chance at life.
The drama unfolded after Mrs Chan, 38, a scientific editor with a publishing company, repeatedly visited
the GP after her newborn sons suffered eczema and constant nosebleeds.
They were eventually referred to Hillingdon Hospital where blood tests revealed they had the rare
disease.
Wiskott-Aldrich syndrome only affects males and it had been caused by a freak mutation in a gene from
Mrs Chan.
Mr Chan said: ‘We had never heard of the disease before - when doctors told us our sons’ only hope of
survival was a bone marrow transplant we were shocked.’
‘It was terrifying facing losing them both if no donor was available.’
The Chans launched a worldwide appeal through Anthony Nolan Bone Bone Marrow Trust, which has a
register of over 300,000 donors and access to another eight million donors from around the world.
There were two possible matches found in Japan, but neither eventually proved to be a good enough
match.
That was when doctors turned to Mr Chan as a possible donor.
He said: ‘Initially they wanted to use a donor unrelated to our family, as they provide a better match and
after the appeal, more than 200 people just turned up at the door at Great Ormond Street wanting to help
the boys by donating bone marrow, which moved us to tears.
‘Parents are only a 50 per cent match, which is a high risk for such a transplant, and which is why an
unrelated donor was searched for first,’ he added.
As a suitable unrelated donor could not be found at that time, the high risk match from their father was
the only chance of survival for the twins.
Alex, who had already been in hospital for three months receiving drugs to boost his immune system,
was the most poorly of the two and it was decided he would be transplanted first.
His transplant took place in December 1999 at Great Ormond Street Hospital. But two weeks later,
doctors announced it hadn’t been a success.
Mr Chan said: ‘It had already been an emotional rollercoaster for all of us, but this was the lowest point.
We didn’t hold out much hope for them at this point.’
Doctors tried again a month later, this time blasting Alex with both stem cells and bone marrow taken
from his father. This time it was hailed a success.
‘We could breathe a sigh of relief at this point,’ said Mr Chan. ‘But by now, Oscar was also going rapidly
downhill and we knew we had to wait at least a year before Alex had recovered enough to donate his new
bone marrow to save Oscar. We just had to pray Oscar would hold on for long enough - but now the clock
was ticking for him too.
Oscar underwent his transplant, using Alex’s bone marrow, in June 2001.
Mr Chan said: ‘We were worried as we knew this had never been done before - so there was no way of
knowing what was going to happen.
‘Doctors said there was only a 25 per cent chance of both boys pulling through, but we knew was no
other choice.’
The cells originally donated from Mr Chan, had become accustomed to Alex’s body, which should have
made it easier for the transplant to be successful.
But again the first attempt failed. It took another operation in December 2002 for Oscar to be
transplanted successfully.
Mr Chan added: ‘The second transplant came just in time for Oscar. As soon as he’d had it he started to
recover really quickly and came out of hospital the first week of January 2003.’
Now both boys, now five, have recovered well and now no longer need to take any anti-rejection drugs.
Mrs Chan said: ‘We are thrilled Alan was able to give our twins a chance at life. We can’t believe they are
doing so well. It seems like a miracle.’
Paul Veys, the consultant at Great Ormond Street, who pioneered the transplants, said: ‘This is an
extremely unusual case of a father donating his bone marrow to his twin son, then that twin donating to
save the other twin.
‘It’s an unusual story as it’s the only case of its kind in the world. Luckily it’s had a happy ending as the
chances of both of them surviving after such a transplant was only 25 per cent. We certainly didn’t expect
this outcome - these boys have been very lucky.
‘We don’t now expect the disease to reoccur as the transplants have been such a success.’
A spokeswoman for the Anthony Nolan Bone Marrow Trust said: ‘Alan Chan was in a fortunate position
to give his sons a future. For thousands of patients this is not an option and they must rely on the Trust’s
register to identify an unrelated donor to offer them the chance of life.’
To find out more about joining the register or to make a financial donation, contact them on 0207 284
1234. To join the register donors must be between 18-40 years old and in good health. The trust has a
specific need to recruit more male donors.