Parents banking on finding a cure for son

Charging around his grandparent's Cambridge home with a "sword" made of two drum sticks, five-year-old Liam O'Neill doesn't realise he is luckier than most other children with cystic fibrosis.

The bubbly youngster is the first New Zealander with the genetic lung condition to take part in a ground-breaking Australian research project aimed at finding a therapy to treat the disease.

When his parents, Monique and Sean O'Neill, explained to Liam they had banked his baby brother Lenny's umbilical cord blood in the hope of one day giving their son a cure, Liam simply responded with "cool".

Described as an exciting resource, the precious cord blood which can only be collected once when a baby is born is full of stem cells which Melbourne University's Faculty of Medicine hopes to use to treat cystic fibrosis.

"We're really rapt to be part of this," Mr O'Neill said. "All we talk about in this house is that we know there will be a cure, or there will be something that will come along and normalise it."

Five-month-old Lenny's cord blood collection and storage was free thanks to a donation by CordBank New Zealand, Cystic Fibrosis Association, Cure Kids and Melbourne University.

The facility to bank cord blood has been available in New Zealand for seven years, and can cost upwards of $2500 but the O'Neills recommend it.

"We tell all our family and friends now. Everyone should bank their blood."

The cord blood could be used to help the child it belonged to or a sibling should they develop an illness such as leukaemia. It could also eventually be used to help sick parents, or donated to other families in need.

"You can't put a price on that."

The couple didn't know they carried the cystic fibrosis gene until their daughter Lily was born with it in 2001.

She only survived eight days following surgery due to cystic fibrosis complications, but when Mr and Mrs O'Neill accidentally fell pregnant a second time they decided to let nature take its course. "We didn't do any CF tests or anything because there was a risk of miscarriage and we just decided this baby wanted to be born and that was that."

Cystic fibrosis primarily affects the lungs and digestive system, causing a build-up of thick, sticky mucus in the body resulting in repeated lung infections and severely impaired digestion.

Liam, who is home-schooled to avoid classroom infections, begins his day on a nebuliser to re-hydrate the mucus in his lungs and make it easier to get it out.

On the day the Waikato Times visited, this routine was done in between a bit of sword-play and plenty of laughter.

The inquisitive boy, who managed to lock his father in another room during the visit, is often on antibiotics for infections, and has to take daily enzyme pills to help with his digestion.

Soccer helps improve his lungs and his parents are constantly teaching Liam healthy routines.

One of the research team leaders, Professor Bob Williamson, said there was a one-in-four chance Lenny's cord blood would be a perfect match for Liam.

Professor Williamson said the research had not yet reached the stage it could help cystic fibrosis sufferers.

"The science is going well but for a child with cystic fibrosis we must be careful of safety and sometimes this can be worked out in a matter of months, sometimes it takes years. We're hopeful that this will move ahead over the next few years."

He said while treatment of cystic fibrosis was continuously improving, it was believed stem cells would add another dimension.

Cord blood is stored at CordBank New Zealand until the child is 18 with storage costs around $200 a year. The cost of this potentially life-saving "insurance" can be financed and CordBank spokeswoman Kate Carter said many New Zealand families are taking up the opportunity.

"There's quite a broad range and people bank it for all sorts of reasons. It's like insuring your car or your house, it's peace of mind."

The O'Neills are so grateful for the assistance they hope to free up income in the next three years to gift to CF New Zealand and CordBank to help other children with cystic fibrosis.

The family are to move to Brisbane next week where a warmer climate will help Liam's progress, but their journey through Liam's early years and research into Pre-Genetic Diagnosis before Mrs O'Neill's pregnancy with Lenny, will be highlighted in a television documentary to screen in New Zealand later this year.

 

 

- © Fairfax NZ News