Luke's Tuberous Sclerosis Page
Mackenzie's Story |
 Just as people can remember what they were doing the day JFK was killed, or where they were the afternoon the Challenger exploded, I too can recall with vivid heartache the very moment I first heard the words Tuberous Sclerosis. I read them, actually. Up until that night on August 20, 1993, I had been the incredibly proud mother of a baby girl named Mackenzie. She had come into the world just one year earlier, all squeals and coos and love. None of my friends' children could match her beauty, her curiosity, or her development. Although I would never say it out loud, I knew for certain that I had been blessed with an unusually special child. You can imagine then, our initial concern that worked its way toward anxiety when our baby girl's arms flexed and her head dropped over and over, just two weeks before she turned one. We decided it was "nothing" and went about our lives until it occurred again on her birthday. An immediate call to the doctor and a subsequent EEG confirmed an abnormality; a visit to a neurologist and a subsequent MRI confirmed the diagnosis. So when the phone rang that summer night in 1993, I watched my husband pick up the receiver to listen to the neurologist's report. I cautiously studied his face, knowing that a smile would end all this worrying, and we would be able to put this experience behind us. Instead, he bit his lip to keep back the tears, and my blood went cold as I realized something horrible was happening to our baby. In a zombie-like fashion he reached for a piece of paper and started writing. With little Mackenzie in my arms I approached my husband, cautiously peering over his shoulder to read the words that would change our lives forever. Tuberous Sclerosis. Mild to severe mental retardation. Epilepsy. Serious skin problems. Vital organs. Can be mild. Can be severe...seizures can be uncontrollable. The walls were closing in on me, the air becoming very thin as the words enveloped my entire body, my entire being - while my precious Mackenzie giggled and patted the tears running down my cheeks. Who was this invader of our happiness, this tuberous sclerosis? I wanted it to go away, far away, for everything to be all right again; she seemed so perfect and so normal. Despite the wishes of a devastated mother, though, that night was the beginning of a new life, a new road for all of us. I did not want to travel this road, but for the sake of our little girl, I knew I'd have to. That was a long time ago. We did go on, and the road has been one of peaks and valleys. Mackenzie has a moderate case of the disease and experiences developmental delay, epilepsy, facial angiofribomas, and a cyst on her kidneys. My husband and I have become well-acquainted with government programs, the public school system, seizure medications, specialists, and medical insurance battles. I also know all too well the sadness that tugs my heart when I see my little girl struggle. The valleys of this journey can be very painful. But there have been peaks of joy that only a child like Mackenzie can give. A joy -- such as when my daughter learns a new word or puts a short sentence together -- that is indescribable. A joy when she hugs me, when she laughs, when she dances. An insurmountable joy when she first said "I love you," just three months ago. Because of Mackenzie, I have learned to look at life through a different lens, and I believe I am a better person for it. in fact, we can't imagine our daughter being anyone other that who she is. For these reasons and many more, I remain the incredibly proud mother of a precious girl named Mackenzie. And although I'll never really understand why TS had to enter our lives, I can say I have been blessed with an unusually special child. Even so, like all parents of TS children, I pray for a cure. Because you are here tonight --supporting the cause of TS research by contributing to this benefit -- parents like my husband and myself can hope that our children may live long and productive lives. Most of all, because of your support, we can dare to hope there will be a day when no one has to remember with vivid heartache the first time they heard the words "tuberous sclerosis." This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
