With more surgery upcoming for Leanna and her sister Bethany, the family arrived back in France this week. They passed through Paris briefly on their way to Montpellier.

On Thursday evening I caught up with the girls and their father Nic for dinner. Afterwards we went down to the Eiffel Tower for some sightseeing. I’m still not much good at driving a wheelchair, and the evening crowds didn’t make it easier! Their little sister Olivia came with us, and had a lot of fun with the souvenir sellers…

Bethany, Nic, Leanna and Olivia in Paris

Bethany’s surgery is routine but still dramatic – she is getting the batteries replaced for the brain stimulator device that keeps her alive. The technology is slowly improving, and doctors  hope that her new batteries will last longer than two years. Bethany uses a wheelchair, but thanks to continuing surgery she remains fairly mobile and independent.

On the other hand, Leanna is facing a much grimmer challenge. In addition to her primary dystonia, she has recently been diagnosed with Parkinson’s disease – terrible news for a 15 year-old girl.  Leanna now requires significant care, and the outlook does not look good for much improvement.

Mills Sisters Registered Charity

The Mills family currently need help raising funds to buy a block of land in Newcastle, Australia and to construct a disability-friendly home for the girls. They have a registered charity, and donations are accepted online at their MyCause page. These donations are tax-deductible in Australia.

In other developments, the sisters now have their own website. With permission of the family, I also have set up a Facebook page – so you can follow them if you’re on Facebook, and I hope to post regular updates there as I hear news…

Once in a while, life throws unexpected meetings at you, meetings that take you completely outside your normal frame of reference.  I’ve had one of those moments this week. Today, I met Leanna Mills. It happened something like this:

Last night, coming home from dinner on the tram, I was talking with an English friend, (in English of course). A man sitting nearby turns around and looks at us. As my friend got off the tram, he gets up and comes over, and asks, in a strong Australian accent, “So, where’re you from mate?”

He finds out I’m from New Zealand, and I find out Nic’s from Newcastle, New South Wales. And he’s here in Montpellier with his family because his 14 year-old daughter Leanna is having life-saving surgery. For the sixth time.

Leanna and her younger sister Bethany (12) suffer from an extremely rare neurological condition called primary dystonia. There is no cure, and one of the few successful treatments is deep brain stimulation, which involves the implantation of electrodes in the brain. One of the only places in the world they undertake the procedure on children is the paediatric neurosurgery department at the Centre Hospitalier Universitaire de Montpellier.

Nic and his wife Michelle don’t speak a word of French, but since 2005, the lives of two of their daughters are in the hands of a few French expert surgeons. As Nic told me, the Australian government provides part-funding for overseas treatment, but most of the enormous costs of travel, surgery and after-care have been paid for by Nic and his wife’s own fundraising efforts, and the help of a few generous donors.

I wanted to give Nic my contact details, but when we parted ways at our tram stop, I didn’t have a business card on me, and Nic didn’t have a pen. So I shook his hand and wished him well, and walked home. A late-night google search uncovered this article about the girls in the Sydney Morning Herald.

Today, I wrote down my contact details on a piece of paper, and stuck it in an envelope. The plan was to drop it at the reception desk at the hospital, and ask them to give it to Nic. I wasn’t even sure if the hospital staff would allow me to do that, given patient confidentiality rules.

But when I arrived at reception, the lady said “Ah yes, the Australian girl. She’s on the 5th floor in Pediatric Neurosurgery. Take the lift, and go on up.” So I found the ward, asked at the nurses’ station, and I was shown to Leanna’s room. Leanna and Nic were both asleep, but the nurse had no hesitation in waking them up to tell them they had a visitor.

I had originally planned to simply drop off a letter. I ended up staying two and a half hours. Stuck in France, the Mills have had few English-speaking visitors. Nic and I talked about the fundraising efforts, and the adventures and dramas the family have had over the course of ten years. A nurse came in, invited Leanna to a birthday party for one of the other patients, and she disappeared for half an hour in a wheelchair.

It seems a cliché to describe Leanna as a brave young woman. At the age of 14, she’s spent more time in hospital than most people experience in a lifetime. She has electrodes in her brain, a battery pack in her abdomen and wires inside her neck. And yet, one day out of intensive care, she was still smiling. And she insisted on getting my myspace address.

Just as remarkable are Leanna’s parents. Nic has given up his job to care for his daughters and to find ways to raise funds for treatment and care. They both look tired, but determined. Nick’s made a solid list of contacts and has grand plans to put together the financial footing the family will need in the future. There’s a book and a website on the way.

Even if the repeat surgery is succesful, there’s a long way to go – Leanna and Bethany both require ongoing monitoring, and changing the batteries in their brain stimulation devices requires surgery every two years for the rest of their lives. The costs involved are extraordinary – but without this treatment, the girls would die.

Bethany, two years younger, is back in Australia and by all accounts doing very well. The Mills’ youngest daughter Olivia also stayed behind in Newcastle with relatives this time, while the oldest daughter Katey travelled with her parents to spend the summer in Montpellier while Leanna underwent surgery.

Next week, the Mills hope to fly home to Australia. I’m going to try and keep in touch with this remarkable family, and when their website is live, I’ll post the link here. Because you never know who might be able to help.