September 21, 1999
From the day Rachel was born, she would watch me from as far away as 20 feet. As soon as I entered the room her eyes would find me.Rachel entered our family after a long period of trouble and suffering, and I saw her as an angel bearing a new age. As it turned out I was right, just not the way I thought.
December 1999
Rachel's pediatrician was concerned by her weak muscle tone. He started a series of tests and examinations; I knew there was nothing wrong with her.New year's eve I watched the 'round the world celebration ringing in 2000. I told Rachel and my son, "This is your century."
February 2, 2000
The doctor called us in the evening, which was unusual, and asked us to come to see him, which was troubling. When we arrived he ushered the four of us into his office, a room I had never seen in four years of visits.The diagnosis for Rachel was Spinal Muscular Atrophy; he said that in its most severe form "it is not compatible with life." Just like that, the reality of this cruel condition washed over us like a flood that swallowed the future.
I hope you never know the despair we experienced then -- that weekend was awful and desparate; it was not the worst however, because we could still hold our baby and kiss her and hear her laugh.
August 5, 2000
At 10 AM, after five months fighting the progressive weakness that surrounded her with oxygen tanks, feeding tubes and medical devices, equipment and supplies, our sweet angel stopped breathing.She died at home, surrounded by her loving family. I swore to her that I would never forget anything, and I will hold true to that promise until I join her again. I love my daughter as fiercely today as if she were alive, and there are many moments where I can feel her presence and know how profoundly she changed me.
We love you Rachelee!
Families of Spinal Muscular Atrophy web site
