As her three-year-old daughter Eva fought a particularly vicious form of leukemia, Amy Winston-Hart spent many months preparing for the worst.
An infusion of healthy blood stem cells from a bone marrow donor were apparently all that was needed to cure her condition.
However, not one single compatible donor match was found despite searching through more than 11 million people registered in the world wide donor database.
“It was just terrible,” recalls Amy. “Eva was getting worse and there was nothing we could do to save her.”
More than 500 people waited in line at emergency donor recruitment clinics in the family’s home town of Market Harborough, Leicestershire, after the family spoke to the media and encouraged more bone marrow donors to come forward.
A match still proved to be elusive.
“It was agonizing,” says Amy.
“We were doing everything we could, but as time went by we really thought nothing would be found to save her life.”
After the long wait, Eva underwent the lifesaving treatment a few months ago.
The stem cells came from a baby boy born thousands of miles away from the UK in New Jersey, USA. These were not bone marrow stem cells, but cells extracted from umbilical cord blood.
New cell production can be generated by these immature umbilical cord stem cells.
Even if cord blood stem cells are not fully matched, they are also less likely to trigger immune rejection from the recipient’s immune system.
Eva’s future is now filled with optimism and doctors agree to this as well.
But that’s thanks only to the decision by American authorities to store cord stem cells. Stem cells can be stored at the request of families today, and some American states even require that they are stored. The material was almost always discarded only a few years ago.
The U.S. is also one of a number of countries allowing stored cells to be used by other than the immediate family.
“Thank God the Americans are doing this, otherwise Eva just simply would not be here,” said Amy, 28, who works as a party organizer.
Leukemia is newly diagnosed in 500 children each year.
Leukemia and other related blood cancers like lymphoma afflict another 20,000 adults each year as well.
The latest generation of anti-cancer chemotherapy drugs have fortunately, proven themselves to be effective in treating the condition for many sufferers.
But leaving a transplant of blood stem cells from a matched donor as the only hope, the condition is drug resistant in at least one in five patients.
More than half of the 4,400 people who are diagnosed with leukemia die every year. This is partially because these types of donor matches are extremely rare.
Umbilical cord blood stem cells have been used in hospitals around the world to treat more than 85 other rare diseases. The cells can generate new cell production, a fact that has been known to scientists for the past two decades.
However, due to limited funding, a supply of just 1,200 units for the whole of last year was collected by only three NHS hospitals in Britain.
The National Blood Service defended its modest record of cord blood banking and said the practice of freezing and storing the cells is limited by the funding made available by the Department of Health despite the fact that 95 per cent of new mothers are happy to donate the tissue for general use.
“I just cannot understand it,” said Colin McGuckin, professor of regenerative medicine at Newcastle University’s prestigious Centre
“We have shown that these cord blood stem cells can not only save the lives of blood cancer patients but have many other uses as well.
“We have shown it is possible to grow them into pancreatic and liver tissue, as well as nerve cells, but unless we have enough cord blood stored, we can’t really do more research or help people.”
Unless the mother declines, umbilical cord blood from all new babies could be collected routinely by NHS if a bill calling for such action is accepted after it is presented in Parliament this month.
“Britain is lagging behind in recognizing the treatment potential from this source of stem cells,’ said David Burrowes, the MP behind the bill.
“It is ridiculous that we are not exploiting it.”
As an insurance policy against their child developing a disease which could be treated by stem cells a number of private companies already collect and store cord blood for families.
The path to private storage costs the donor