this biliary atresia experience

grown-up girl at a family birthday dinner dressing up in an op-shop bride's dress and veil When I put this blog together, I had hopes of keeping it updated with Rose's milestones. So much for my intentions! Here we are, five years after Rose received what she describes as "the best birthday present I've ever had." Here is our bouncing 6-year-old school girl, whose liver function remains (fingers crossed) perfect.

friends, then, and now. . . Rose on the left, and Bella on the right. Photographed in our hospital room in December, 2003, about 5 months before Rose's transplant. Rose and Bella play hilariously together whenever they meet. Their common experience (both born with biliary atresia) isn't exactly on their agenda. Dancing is, as well as cuddling, and falling over. The time has come now for Bella - she requires a liver transplant. Australian Organ Donor Register

Shane waits outside the broadcasting booth at ABC Melbourne's radio studios On Tuesday 6 February, we were guests on Jon Faine's Conversation Hour , interviewed by Jon and his co-host Marieke Hardy . Jon and Marieke first interviewed Allan Turner, the father of the late Zaidee Turner. His daughter's sudden death in December 2004 led to Zaidee becoming the only child organ donor that year in the state of Victoria. In honour of their daughter, Allan and his wife Kim set up the awareness-raising organization Zaidee's Rainbow Foundation . Many readers will already be familiar with the work of this formidable man. Coincidentally, Allan recently left a comment on this blog, and I sent him an email in reply. I had no idea though that that we would be meeting him so soon. Rose was delighted to cuddle him, and to chat with him about the lovely Zaidee. Zaidee's middle name is Rose. Rose leaving the ABC's Southbank studios, grippi...

The day when we held our frail 8-month-old, hovering below 6 kilograms, wondering whether or not she would live. . . well, it seems more distant than ever. ROSE HAS BEGUN KINDERGARTEN

The Australian Transplant Games are over until 2008. Rose's photo made it to a couple of newspapers this week: a  Geelong Times (article entitled "Plenty of heart on the track"), and a  Herald Sun (article entitled "New shot at life"). My incredibly generous cousin and her husband have been hosting us, on the beautiful Bellarine Peninsula, near Geelong, allowing us to easily attend the Games. We're so grateful for their love and for their personal support. And on a broader level, they are strong supporters of organ donation, with a much loved family member six years ago having donated all of her organs, changing forever the lives of eight recipients. I have mentioned baby Rani. She died this month, before she could receive a liver transplant that she desperately needed. Please think of her bereaved family, and others like them who will lose a family member this year because of the shortage of organ donors. Most importantly, if you do support...

Rose is the youngest registered competitor in the National Transplant Games , being held this week in Geelong. Pictured here at the opening parade, with some of her cute little Victorian competitors. Rose's 10 metre run will be in honour of two people: her wonderful donor who has saved her life; and her little 12-month-old friend Rani , who died on September 1, waiting for a liver transplant.

Organ Donation Rose's excellent doctors, and possibly hundreds of other professionals, delivered her to the point of being able to receive the gift of a donated liver. Our family and friends held us together during the long wait. But without the decision of a grieving family and the gift that flowed from their actions, nothing could have helped Rose to survive for much longer. Overly sentimental words seem inappropriate in thanking families who have agreed to the donation of organs. It's hard to get the words right. I want to tell families who have donated organs that we cherish the gift of Rose's liver; that our little girl is now strong and healthy, with no apparent memory of her illness; that we never forget their generosity. We are, of course, registered organ donors. Shane describes like this his feelings about Rose receiving a liver: "With young children, it is usual to imagine with excitement and trepidation their future; fanning out like the branches of a tree ...