The Wind of Freedom Blows
Six years ago, when we still lived in Bristol, I opened box of empty vials waiting to be filled with Mathilda's blood. Inside, was a stack of paperwork headed with Stanford's insignia--a red fir tree with the words Die Luft Der Freiheit Weht wrapped neatly above. Below, was a 20 page medical contract.
Mali Einen (right hand to Prof. Mignot at Stanford's Center for Narcolepsy Research) had sent the box to us so they could test Mathilda's blood, confirm her diagnosis of Narcolepsy and link the onset of her condition to the H1N1 vaccine she had received just months earlier.
And so our relationship with Stanford began. I reached back in to my (limited) high school German: Die Luft Der Freiheit Weht---The wind of freedom blows.
I was reminded this week of the enormous privilege it is to have Mathilda under the care of the team at Stanford. Our journey here to the US has been long and fraught with many bumps in the road but knowing she is receiving world class care is reassuring beyond measure.
On Tuesday we drove up from LA to Palo Alto on the 5, bypassing thousands of corn fed cows and oil pumps. It still feels weird when I see such landscapes-- like I'm 14 and it's a Thursday and I'm about to watch an episode of Dallas or something.
But then a heavy dose of reality brings me back. I'm taking my daughter to see a man who not that long ago diagnosed her as the World's youngest diagnosed Narcoleptic.
This time though, we are in for a fun afternoon filming Watson, Prof. Mignots' very own narcoleptic chihuahua. It was a treat to meet two other delightful families and their CWN whilst a team from Bristol UK (would you believe) filmed the children meeting Watson for their Life of Dogs series.
We saw him nap in Prof. Mignot's arms and try to stave off temporary paralysis when he was happy. Of all the things that trigger little Watson's cataplexy we discovered, is radishes. Seriously, if we gave our Watson a vegetable of any kind he would turn his nose up and demand carbs before charging through the house in a delighted frenzy.
Prof. Mignot talked of how (his) Watson falls asleep all day (excessive daytime sleeping) and becomes cataplectic on a walk--his favorite thing. These few hours gave the children an opportunity to express the challenges they have figuring out their own symptoms, how Gabriella, Jamison and Mathilda try an avoid having cataplexy with friends around, and how they wish they didn't have to nap at school. And perhaps caring for a narcoleptic dog is what gives the wizard of Narcolepsy his empathetic edge. He really gets it.
Then there was a tour of the legendary laboratory--where it all happens. The genetic testing, the research into causes and treatment for Narcolepsy and other auto-immune disorders. Right now they are looking at the effect of vaccinations on NASA astronauts. Totally regular, non?
Afterwards, I drove Mimi to the sleep lab in Redwood city for an interesting night.
Now, she has already had a few of these studies over the years, but none of them quite compared to the nature of this one. Not only were there more leads (electrodes placed everywhere except her back) but also 2 nasal cannulae, which bothered her most of all. It was hard to sleep with all the wires. Harder still to take Xyrem with the equipment covering her mouth. But our two technicians Jerry and Mark were incredibly patient and together we encouraged Mathilda into a place of compliance and reassurance. Understandably, she begged to have the leads taken off, she was right to feel upset and complain, but this was the only way to find out the reason for her waking through Xyrem at home each night.
Narcolepsy unfortunately often comes with a myraid of other sleep disorders. She's already had obstructive sleep apnea and a question mark hangs over whether she also has central sleep apnea too which by all accounts is rare in children. By 4 am Mathilda was adamant it was over, and two hours later they had enough data to begin detaching the equipment. Those last two hours were pretty long for all of us.
A small crew of doctors "wet read" the results immediately (Stanford speak for a preliminary look at what showed up) and by 10 am we were in a small clinic room with Dr. Emmanuel Dement and Prof. Emmanuel Mignot to discuss how best they can manage Mathilda's night and day time symptoms going forward to enable her to thrive at school and home. In other words, to try and minimize the impact Narcolepsy has on every aspect of her life.
Finally, Mali Einen met me to discuss the new medication (a day time stimulant) and when we can expect confirmation of Mathilda's central sleep apnea. At this point I'm not really sure what that means. And If I'm honest, I'm too tired to look it up--it might be the sort of thing I need to psych myself up for. It's certainly not do-able today.
I also have no idea how we'll pay for this week--the cost of private healthcare in the USA is, to some extent, artificially inflated and our insurance doesn't cover this level of specialist care. But I do know that we have been given reason to be optimistic about Mathilda's future because if nothing else, she's in the best hands. And I'm not sure we can put a figure on that.
My regret is that not every child like Mathilda has access to such resources. I am well aware that CWN here in the US and in the UK and further afield should have access to the medication they need to offset their symptoms and give them what is rightfully theirs--an opportunity to thrive at school and at home, and the opportunity to live a near normal life. Yet, sadly, that eludes many CWN worldwide.
If only that were not the case.
Earlier this morning we packed Mathilda off to school. Back to her teacher and her classmates. Back to the tropical terranium she's making in science and the Latin test we didn't have time to work on.
Perhaps she'll continue to excel in languages, struggle in PE, and love recess despite the physical and psychological road blocks that threaten her. Perhaps she'll go on to learn other things like Irish dance, philosophy, and chemistry in 10th grade.
Maybe she'll grasp it one day:
that as exhausted parents we did our best along with the doctors that devote their lives to better the lives of children just like her;
and that behind the fuzz of a narcoleptic chihuahua are political complexities that frustrate and thwart work that would otherwise be accessible to all those that need it.
Mathilda might one day realize that there was something significant in those 12 vials of her blood that we sent from our home in England to a lab in California--an axis upon which her life (and ours) turned.
Die Luft Der Freiheiht Weht ... The wind of Freedom blows.
With grateful thanks to the "dogs for life" film crew from Bristol, Jerry, Mark, Mali Einen, Dr. Dement, Dr. Guilleminault and Prof. Mignot.
And to Mathilda Anais ... I'm proud to call you mine.