Savananh was born on a cold winter day in Sydney Australia, surrounded by love. I don't think I've ever been happier than I was in that moment. Here was this tiny bundle, a daughter, all I'd ever dreamed of, placed in my arms, a gift! The night she was born I didn't want to go to sleep. I just wanted to have her next to me and look at her! June 30, 1999, everything was perfect in my world!
Fast forward to March 2002.
I was 14 weeks pregnant with our second child. My husband Peter and I had moved from country Australia to the fast paced Los Angeles for Peter's work. My days were filled with watching Savannah draw, devour books, swim and her favorite, collect pine cones in a little red wagon she would pull along behind her. Somedays, I had to pinch myself at how lucky I was. However, around this time my happy world was to be shattered....if I had've had a crystal ball back then I wouldn't have believed what was about to happen to my "perfect" little family.....my baby, my world..Savannah!
I had noticed Savannah's right eye appreared to have turned in towards her nose and her walking seemed to be getting a little on the wobbly side. After visiting countless doctors, who assured us all she would need was a small operation to correct the turned eye, we met with one who was about to change everything!
The doctor at the L.A Childrens Hospital ordered an MRI immediately. I wasn't concerned at all, it was just a precaution she told us. I've had three phone calls in my life that have changed me, this one would change my life, my world, and everybody around me, forever.
At four a.m. the morning after Savannah's MRI, I woke to the soothing sound of the shower running, reminding me that Peter would be leaving early, for work in Atlanta. With an hour or more for sleep, before he’d go, hard as I tried, my anxious mind wouldn’t let me back into my dreams. I couldn’t wait to call the doctor and get the MRI test results. At nine a.m., before I had the courage to call, the phone rang.
“The good news is there is no tumor in Savannah's brain,” Dr. Buffen said.
“Oh, Thank God!” I mumbled, slumping into the nearest chair.
“But,” she went on, “there are some changes in the white matter of Savannah’s brain.”
“What does that mean?” I asked, while shaking my head in adamant denial of whatever she would say.
“I’m not quite sure,” she continued, “but I don’t think there should be any changes. I’ll check with the radiologist and call you back.”
Not too alarmed yet, I really wanted my Mom at that point, so I called her in Australia, telling her the findings. Her always-positive attitude usually made me feel better straight away and sure enough, she pointed out that Savannah was an active little two year old, certainly not a sick one. Like me, she couldn’t imagine there was anything too seriously wrong and encouraged me to not worry and just wait for the doctor’s next call. At mid-afternoon, misplaced hope faded, when the call came in.....
Savannah was engrossed in the TV then, watching “Winnie the Pooh.” I was standing on a chair in the kitchen, scrubbing out the cupboards, trying to keep at least my body occupied, while I awaited the doctor’s next phone call. The telephone rang and I raced to answer it. Dr. Buffen had spoken with the radiologist. What she said next was devastating--worse than even my rampant imagination had come up with.
“This is very, very serious,” she said. “You and your husband need to come in to Los Angeles Children’s Hospital tomorrow, to discuss the findings of Savannah’s MRI.”
I could hear my heart thumping, as I asked her what they’d found. I could hardly breathe, barely got the words out.
“Savannah appears to have some form of leukodystrophy, a genetic condition which affects the white matter of her brain.”
I wrote the word down. Such a foreign and ugly word to have anything to do with our beautiful, precious child! I could hardly pronounce it, let alone spell it. I had the doctor spell it out for me, so I could look it up and not mistake it for anything else. Her next sentence was the worst blow of all.
“In most cases the condition is fatal.”
There was that awful word--“fatal”! I could not comprehend that one. Mind and body were reeling, could not cope with the implications of that word. I kept repeating over and over, that there must have been a mistake. Some mix-up of her test results. By then, I was too afraid to breathe, to think, or speak another word. Anything I said would have to only make things worse, I thought, so better to keep quiet and let the doctor apologize for their mistake. Which of course, it wasn’t.
After I’d said goodbye, my hands were shaking so hard, I almost couldn’t type the ugly “l” word into the computer’s search engine. And, as bad as I already thought things were, I was totally unprepared for what I was about to learn. When I saw what came up, my heart dropped into the pit of my stomach. What I couldn’t avoid reading was that there are at least thirty-seven forms of leukodystrophy. With each line I read, more tears poured out, threatening to drown the keyboard. Savannah was right by my side, still in her flannel jammies, and I stared at her, shaking my head in stubborn disbelief. How could this be happening to our beautiful little girl? It had to be wrong! There had to have been a mistake.
The first form I read about was called MLD--metachromatic leukodystrophy. The entry described how patients would lose all of their physical abilities, one by one, becoming bedridden, unable to speak and eat, with blindness following. Seizures and paralysis would then occur, with death the certain outcome, within three to five years after onset. It was too shocking for me to grasp, but one symptom described was an unsteady gait, which I swear made my heart stop. I didn’t want to believe I’d read that, but deep down I knew that article was describing my little girl and what she’d been doomed to, by some disgustingly unfair fate. At that moment, I knew the doctor was going to be right. I had to call Peter.
My fingers barely working, I tried to phone Peter who was in Atlanta, a half-day’s flight away. Once I heard his voice, my sobbing was unstoppable. I’m sure I was totally incoherent, trying to repeat what the doctor had told me. Peter was speechless. Like me, he was not prepared for such unbearable news.
“We’ll see Dee, maybe it’s a mistake,” he said, trying to believe that.
And so began our journey of hope........................