The story of Cami
My name is Cami. I’ll be turning 26 in just three short weeks. I am thought to be the oldest to have ever lived with my syndrome known as Stuve-Wiedemann Syndrome.
I went until I was 19 years old not even knowing what my syndrome was. In 2009, a geneticist gave my younger sister and me both an informal diagnosis of Stuve-Wiedemann Syndrome. This moment was one of the happiest of our lives as we had just followed other syndromes but knew that they weren’t the exact diagnosis for our entire lives. At that time, my geneticist believed that the only genetic testing was done in Germany. About two years later, in 2011, I did my own research and found a testing center here in the United States that does the genetic testing for this particular syndrome. My geneticist ordered the testing and two weeks later, I was given the formal genetic diagnosis of Stuve-Wiedemann Syndrome. I cried for about a week once I got this diagnosis. My parents had kept my younger sister and myself alive for 21 years and to this day, I am thought to be the oldest survivor to have ever lived.
It is bitter-sweet being the oldest with my syndrome. Scary to think that anything can happen at any moment and change my life forever, but also that I am part of history!! Not necessarily how I wanted to become famous, but I’ll take it.
Lately, I’ve noticed that I have accidently been stumbling across more and more individuals who want to but cannot, or have not been able to have children of their own but wish to. I am choosing to write about this because it is coming to my realization just how much more common this is than it is let on to be. Why doesn’t one choose to speak out about this? In my opinion, having children is what you’re supposed to do in life. It’s part of life. You grow up, get married, and have kids. It doesn’t always happen in that order, but for the most part, that is the circle of life. For someone of my age (25), I feel there is added pressure from your family sometimes and also from your peers. All of our peers are getting married and having children – why aren’t I?
While I am the oldest to have ever lived with my syndrome, it is hard to say what one is to expect. Though I have never been pregnant, in my case specifically there isn’t an issue of conceiving (that I know of). The issue is keeping myself healthy during a pregnancy, if one were to happen. Because of my physical disability, doctors have expressed concern for my health if I were to carry a child of my own. They have expressed that my health is my number one priority and that I should be sure to realize this if I ever choose to carry a child of my own. They just don’t know what to expect as nobody with my syndrome has ever conceived, or even lived old enough to do so.
I am choosing to write about this because it has come to my attention how common this is. But I don’t feel that one should be pressured or rush into having children. Right now, I completely enjoy being selfish and spoiling others’ children as I wish without feeling obligated. Before having kids is the time to be selfish if there ever was one. This isn’t to say that I don’t ever want children. I think that right now, I am just at peace with the facts as they are. The facts are that I may not ever be able to carry my own child due to my own health. But I also realize there are several other options if and when I have a child. For now, I will continue to enjoy spoiling the children that I have the privilege of being in my life.
Just last summer, my sister and I had the opportunity to meet a child who also has Stuve-Wiedemann Syndrome. It was our first time ever meeting another with the syndrome. This was such a happy time for me and a dream come true!
I am so grateful for my life as I have been through so many obstacles which could have taken my life. These obstacles have made me a fighter. They have given me an attitude in which I must never give up. For that, I am so incredibly grateful.