Bethany and Leanna – an update

I wrote last year about my chance meeting with Leanna Mills and her family in Montpellier. I was particularly moved by their story and have kept in touch with the family since.

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…

Meeting Leanna


Leanna (top) and Bethany Mills (Photo: Natalie Grono/Sydney Morning Herald)

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.

Invasion of New Zealand

Australian TV Show The Gruen Transfer asked a couple of advertising agencies to come up with a campaign to promote a military invasion of New Zealand by Australia.

Quite amusing really, we didn’t know the Aussies cared so much about us! A hi-res version of the second ad is online at www.invadenewzealand.com

Hat tip to Duncan MacLeod.

Cornbury Festival – Day 2, Crowded House

Crowded House

Crowded House have an “ace up their sleeve” for the wet, final night of a music festival. They can cheer up the crowd by opening their set with a singalong about the weather.

And so with a rousing rendition of Weather With You led by Neil Finn, Crowded House pulled the audience out of any depression brought on by damp socks and muddy trousers, and provided a great closing act of Cornbury. (The song was filmed by salsbury15 and posted on YouTube.)

Neil Finn

“The sound of Te Awamutu had a truly sacred ring…”

In contrast to Paul Simon the night before, Crowded House was definitely there to give the people a good time. Neil Finn knows how to create an experience of “the moment” that goes beyond just hearing all the hits on a rainy Sunday evening.

At one point, a giant soap bubble drifted across the stage, and Neil stopped the band mid-song, saying “Oh wow, check out that bubble!”. And 7,000 people looked up and watched a bubble float above their heads. You had to be there.

More Crowded House fun was had a week earlier at Glastonbury, (but without the rain). Watch the band lead tens of thousands in what was likely the best public singing of the festival. And the best mexican wave…

So yeah, Crowded House played all the favourites: Don’t Dream It’s Over, Four Seasons in One Day, World Where You Live, Distant Sun, Fall At Your Feet… they are unashamedly a popular band gathered around an expert writer of popular music. No pretension, just great songs and good times.

A welcome addition to the band for their 2008 summer tour of Europe is Don McGlashan, who augmented the music with a menagerie of instruments including ukulele, euphonium, toy piano and pocket trumpet.

The few kiwis in the crowd were hoping that Don would step up to the front with his guitar for a Mutton Birds or Front Lawn number, but it never happened. But perhaps there is no more typical Don McGlashan performance than to stand at the back of the band, tinkling on a glockenspiel on someone else’s songs…

ANZAC Memories

Dave Dobbyn – Lament for the Numb
From Overnight Success: Columbia/Sony [Buy]

Chunuk Bair
NZ soldiers on Chunuk Bair, August 1915

The choice of music for this post is one of my favourite songs by a New Zealand songwriter. Yesterday was ANZAC Day. It’s one of the few occasions that kiwis assert our national identity, so I went to the University’s memorial service, which this year just happened to be in the familiar surroundings of New College Chapel.

As expected the choir did the event proud, singing Stanford‘s evening canticles in Bb and John Ireland‘s anthem Greater Love Hath No Man. The organ postlude was variations on Hyfrydol, a tune which is currently chasing me around the world…

The Vice Chancellor John Hood (a New Zealander, haha we’re taking over) read the lesson, and the President of the Oxford Turkish Society read an extract from Kemal Ataturk‘s speech at Gallipoli in 1932, which concludes:

“…you, the mothers, who sent their sons from faraway countries wipe away your tears; your sons are now lying in our bosom and are in peace. After having lost their lives on this land. They have become our sons as well.”

USS Westpoint
USS West Point, the troop ship that took my grandfather to New Caledonia

Today, we are lucky that war is a remote, abstract concept for most of us in the West- something done by professional soldiers in countries far from our comfortable lives.

It’s hard for us younger people to imagine what life was like for those who lived through the World Wars. Here in Oxford, I’m always aware that this is the town where my English grandparents spent WW2, working for the British Ministry of Food after evacuation from London.

Recently I was sent a transcript of my New Zealand grandmother’s memories of WW2. My grandfather was called up for army service in August 1942, and he learned the news on the day of my mum’s first birthday party. This was my grandmother’s recollection, written in 1960 :

“…the phone rang at Rosemary’s first birthday party in August 1942. It was your father ringing to tell me that he had been called up and was going into the army. He was to report for duty in a week’s time! I felt as though the end of the world had come – my world anyway. All the presents for our little guests were forgotten – a basket full of balloons and sweets and toys. I suppose he just had to tell someone but what an end to a little girl’s first birthday party! You’ve heard about people ‘folding their tents and fading into the night’ – that’s how my friends seemed to go. Our hearts weren’t in the celebration any longer and anyway, the party was nearly over.”

Bourail
Bourail, New Caledonia, where my grandfather served in WW2 with the 3rd New Zealand Division

About Bloody Time, Mate

Stolen Generation

There is still some hope for the world. The new Australian Prime Minister Kevin Rudd is preparing to deliver an official apology to the stolen generation in the parliament in Canberra on February 13th.

Saying ‘sorry’ really is only a first step, but it is a significant step by an Australian government to acknowledge some of the deep injustices suffered by the koori since colonisation. It was a step that John Howard (and deputy sheriff and former Aussie PM) John Howard famously refused to take.

I hope the Rudd government offers a turning point for Australia and their relationship with the koori, who represent some of the oldest cultures and languages on the planet. Maybe the last 200 years of colonialism and shameful government policy represent just a minor blip in the 60,000 year history of human habitation in Australia.

I couldn’t resist…

1. Posting this article in which an Australian actually expresses admiration for New Zealand. (It’s a fairly rose-tinted view, but we’ll take the compliments – I wonder if my blog “exudes a confident, intelligent feminism”?)

2. Laughing at the “news” that Australia is destined to become the hip-hop capital of the Southern Hemisphere

3. Downloading The Brady Bunch Kids singing “Drummerman”. (That guitar is WAY too funky for a Brady song). Thanks to soul-sides.com

4. Posting this photo of Ahmed Zaoui singing at the New Zealand Music Awards a few weeks back. I wish we treated all our asylum seekers like this all the time 🙂

Murphy’s Law is Proved Correct


Photo: Aram Sinnriech

Oh Joy. A panel of experts has provided the statistical rule for predicting the law of “anything that can go wrong, will go wrong” – or ((U+C+I) x (10-S))/20 x A x 1/(1-sin(F/10)).

After tests of the experiences of 1000 people, they have discovered “things don’t just go wrong, they do so at the most annoying moment”.

Retour de la Voyoucratie…

A momentous weekend of political movement in the South Pacific, perhaps the least momentous of which was the election of Auckland’s first centre-left city council since Colin Meads was in short pants. New mayor Dick Hubbard’s surname, and his profile as a local breakfast cereal mogul will no doubt lead to some painful punning headlines over the next four years. It also remains to be seen whether City Vision-Hubbard can do any better than the Citizens & Ratepayers who have pretty much dominated Auckland politics since the Second World War.

Across the Tasman, Australia swings convincingly to the right, and George W. Bush rests easy knowing that his diminutive sidekick will still loyally guard the kennel in his part of the world. Speak softly and carry a big heap of stealth cruise missiles. Way to build trust across Southeast Asia, John!

And in contrast to the the mild mannered Anglo-Saxon power plays of this week, French Senator Gaston Flosse has successfully inveigled a toppling of the pro-independence government of Oscar Temaru in Tahiti after only 15 weeks. As Le Monde points out, Temaru and his fragile coalition were probably not properly prepared to take charge of the territory, (and would have trouble fulfilling an election platform that included the introduction of a 6 hour working day and a 50% increase in the unemployment benefit). Nevertheless, the methods used by Flosse to obtain the vote of no confidence probably deserve closer scrutiny : allegations that Paris threatened to reduce the subsidies that keep the colonial economy afloat, and even accusations from the French Socialists that Flosse’s machinations had support from the heart of the central government…

Tension is “palpable” in Papeete these past few days, and an attempted knife attack during the parliamentary debate on Friday night suggests that this situation has the potential to rapidly turn ugly…

Il est temps de partir, John !

This weekend’s Le Monde has this story covering the Michael Moore-esque “Time to go John“, a series of shorts pulled together by Australian film makers exposing some of the questionable actions of the Howard government.

Interesting to see that a European paper should take notice of political and articistic manouevrings so far from the metropole – if only there was a more active critique in the metropolitan French media of the continuing colonial regime in the Pacific….

The Observer also has a horrifying article giving a glimpse into the extent of the criminal networks abducting and trafficking women and children across eastern Europe. Where is this all heading?

It is ultimately abhorrent that there are people growing rich off the prostitution and abuse of children anywhere in the world. But this is happening on a large scale inside (or at least within spitting distance of) the European Union. Do we actually care? Are we powerless to stop this?