Julia's Dream began on September 18, 2002 when she emerged from her mother's womb to a sea of tear streaked, joyous faces of her mother, father, two sisters, Grammy and Grandpa and a gaggle of nieces, nephews, Aunts and Uncles. As with most newborns she perceived none of this other than perhaps some sense of familial warmth blanketing her newborn body. It would be barely 1-1/2 years later when we learned that Julia really couldn't perceive much more than that, would never walk or talk, would eventually have to be fed through a tube and that the cost of her care would push her family to the breaking point over and over again. On April 15th, 2004 my brother picked up the phone and learned that his beloved daughter was diagnosed with an "orphan disease" called Rett Syndrome.
On 12/14/09 at 1:36PM, one of Julia's Dreams died.
That was the moment when it was first reported that President Obama's Chief of Staff, Rahm Emanuel, "encouraged" Senate Majority Leader Harry Reid to cave in to Sen. Joe Lieberman's (I-Mendacious) demands that the bill achieve no effective means to provide competition to the insurance cabal to drive costs down or eliminate annual caps.
My brother and sister-in-law both work, have a mortgage, a teenage daughter, another in elementary school and of course Julia. In many ways the typical middle class American family. They go to church, pay their taxes, vote, even used to take vacations - but that has now become impossible as Julia could have a series of seizures without warning at any time and they must remain close enough to a hospital than can deal with this should it occur ... which it has several times.
As with many families the Recession has hit them hard. It has been particularly difficult when the cost of medical care and insurance - unlike prices on many other goods and services - has been seemingly unaffected by the economic reality in this country. When is the last time you heard of a price reduction in insurance or emergency room visit? It perversely has exhibited a pattern diametrically opposite to many of those other costs. As the ability of middle class families to spend money on anything - let alone essential things - has shrunk month after month, week after week, day after day over the last 2 years the cost of insurance has risen in opposition to this daily reality for millions of our fellow citizens and this perversion continues unabated.
Julia's family will make it through this year without hitting the cap - barely. This may not be true next year. Julia is getting more unwell with each passing month. You see, two weeks ago Julia was rushed to a hospital almost 60 miles away from where they live because it is one of only a few in the entire country who have the knowledge to work with girls with Rett.
Julia suffered an increasingly violent series of seizures a couple of weeks ago, was aspirating and choking on her own vomit and while my brother was frantically driving her to the hospital in the early hours of the morning himself because he couldn't pay for the cost of an ambulance to do it, and his wife had to stay home with the other two girls and it was so very early in the morning. He had to pull over several times on the side of the road and get her stabilized again before driving onward. This time, thankfully, she made it through. She was put into something called Ketosis and now a specialized diet of specific mushed up food has to be fed to her through a tube in her stomach. She will never know the sensation of actually eating again. Julia loved to eat bananas, loved how they felt, would laugh at their squishiness, took great joy at launching great gobs of semi eaten mac-n-cheese about the room. We all have many mac-n-cheese laden laundry trips under our belts. Those days are over.
Rett Syndrome is an "orphan disease", it occurs in less than one out of every 10,000 births and consequently gets little notice and little funding. Indeed, there are only seven places in the country that can even diagnose Rett Syndrome. Rett is a neurodevelopmental disorder that hits infant girls. Some of the problems Rett girls may face are screaming fits, panic attacks, loss of speech, inability to walk, sensory impairment and gastrointestinal problems. It exhibits many similar traits to muscular dystrophy. There is no cure. In the absence of severe medical problems there are Rett girls who live into adulthood. Julia has been beset with significant medical challenges for many years. We don't know what next month will bring, let alone tomorrow.
I have done political work for almost 20 years, and have been following the health care reform machinations this year very closely. I had great hopes in September when I listened to my President whom I voted for with pride talk about his goals for health care reform. I have always thought that it was a fatal strategic error for him to cede his bully pulpit to the Congress to get this done in a way that actually provided meaningful reform, price competition and all the other things he allegedly supported. Sadly, this has now proven to be true. Had he been out front and unambiguous about his bottom lines from the get go publicly in February on up until today, not just in closed door meetings and the odd town hall here and there, the narrative and drive for those bottom lines would have been clear and consistent. It would not have allowed Landrieu, Nelson, Lieberman et al to be so emboldened. I believe we would be in a very different place then we are today. If it really was his "number one domestic priority" he would have made it so, instead of sacrificing it on they mythical altar of so called "bipartisanship". This was, instead, a profile in timidity, triangulation and triumph for the insurance industry cabal.
People will die because of it.
My brother called me in tears the other night to ask simple, poignant questions that I with all my years of experience and knowledge could not answer for him. I'll never forget the conversation: "I believed them. I voted for Obama. You told me I could trust him. Don't they know what will happen to us when I hit the cap? We are going to lose everything. What am I gonna say to Julia's sisters? How am I ever gonna pay for her meds? She has to go to the hospital or she could die. Why don't they care? Why don't they ever care?"
"Why don't they ever care?"
Julia's 8 year old sister was asked awhile ago in her third grade class to compose a poem about anything she wished to write about. She was given the first two words of each line for the poem. Here is what she wrote:
I am.............nice and thoughtful
I wonder........if there is a cure for Rett syndrome.
I hear............my sister’s cries at night.
I see..............leprechans talking to me saying it’s going to be ok.
I want............my little sister to walk.
I am.............. nice and thoughtful
I pretend........to be a doctor.
I feel.............my blood rushing through me hard.
I touch..........the hands of other Rett girls.
I worry..........if my sister will make it through life.
I cry.............when i think about my sister
I am.............. nice and thoughtful
I understand....life can be very hard
I say ............things will get better.
I dream..........to be the best Rett doctor in the U.S.
I try...............to be the best big sister.
I hope............there is a cure for Rett syndrome
I am.............. nice and thoughtful
I am weeping as I write this diary. I weep for my brother, my sister-in-law, and my nieces. I weep for the catastrophe that may befall them next year. I weep for the millions of other middle class families - also my brothers and sisters in our country - facing similar challenges.
I weep for my country.
"Why don't they ever care?"