New study offers hope to cystic fibrosis sufferers

A Tauranga couple are hoping a cure for cystic fibrosis may be just a stem cell away.
Their three-year-old daughter Alexis Russell-Barr suffers from the life-threatening and incurable condition, but a new study from University of Melbourne's Faculty of Medicine suggests umbilical cord blood can successfully treat cystic fibrosis (CF) by restoring lung function.
James Barr and Katrina Russell-Barr have just had their second baby, Mackenzie, and banked her blood with CordBank in the hope it can one day cure Alexis.
"To have a cure that would allow her to breathe easy - it would mean a life for our daughter," Mrs Russell-Barr said.
Bob Williamson, Professor of Medical Genetics at the university, said a sibling of a child with CF was an ideal match.
"Sibling cord blood has a one in four chance of being a perfect match that will not be rejected by the immune system of a child living with CF."
CordBank is the country's only cord blood stem cell banking facility, and has begun offering free services to families of Kiwi children with cystic fibrosis.
"Three a year get picked [for free blood storage] and we were really lucky. We couldn't afford it otherwise," Mrs Russell-Barr said.
Cord blood banking involves collecting blood from a newborn's umbilical cord immediately after birth. Because the collection occurs after the cord has been cut, there is no risk or pain to the mother.
Mrs Russell-Barr said since having Mackenzie, she and her husband had realised how different life could be if Alexis were cured.
The toddler has to endure vigorous daily exercise and physiotherapy to help with lung drainage, and must take multiple medications and antibiotics regularly, eat modified meals and have regular tests at the hospital.
"If she gets a cold, we're usually at the hospital within 12 hours."
Cystic fibrosis is the most common severe inherited disease, where children are born with a defective gene which causes mucus in the lungs and can lead to life-threatening infections. The life expectancy of someone living with CF is about 30.
"At times it can be emotional," Mrs Russell-Barr said.
"It's a lonely disease. There are good support groups, but the kids can't get together because they make each other sick."
Alexis didn't grow well as a baby - at 8 weeks old, Mackenzie is fitting clothes her sister wore at age 1.
"Next year scares me, with school coming," Mrs Russell-Barr said.
Kiwi families will be among the first to benefit from the study once it has passed the clinical trial phase and treatment has been developed.
There is a one in 200 chance a person will require a stem cell treatment in their lifetime, so Mrs Russell-Barr saw the free service as a valuable investment.
"We banked Mackenzie's blood, not just because it could help Alexis in the future, but for the future of this child. You never know what is around the corner for both children in the way of disease and research."
The initiative is being done in association with the Cystic Fibrosis Association of New Zealand, Cure Kids and the University of Melbourne.
Cord Blood 
What is it?
Cord blood is blood that remains in the umbilical cord after birth. It can be used in transplants to repair damaged tissue.
How much is it to store cord blood?
CordBank charge $2900 for the first child or $2700 for siblings, plus a $215/year storage fee.
When can it be collected?
The blood must be collected immediately after birth.
How long is it stored for?
Cord blood is stored until the child turns 18, then they decide what happens to it.
Why store cord blood?
It's an exact match for your child and can be used to help treat cancer, cerebral palsy and type one diabetes. Blood in the umbilical cord has less exposure to viruses.
Where is it stored?
CordBank store blood in a sterile laboratory in Auckland at -196C.