My 15 year old niece Kaitlyn was born with Common Variable Immune Deficiency Disease, or CVID. In layman's terms, her immune system is almost non-existent.
In 1976, another child who suffered from a form of this disease was portrayed in a made-for-TV movie starring John Travolta. That child's name was David Vetter. The movie was called "The Boy In the Bubble." David lived for 13 years, most of it in a sterile environment at a hospital, encased in a bubble which prevented him from contracting germs which most of us throw off every day. Children like David and Kaitlyn can't shake off common colds and such like most of us do, and we live with the constant fear that a super bug, flu virus, pandemic or epidemic would be fatal to her.
CVID is a life-long, chronic, life-threatening disease. Kaitlyn takes an intravenous treatment of a synthetic drug manufactured from blood plasma once a week just to survive. David Vetter died while this same medicine was in the process of being approved by the FDA.
Kaitlyn is one of only nine people in the State of South Carolina who have CVID. Prior to last year, she had to travel to a large hospital in Columbia, about 200 miles round trip, once a month to have the treatments administered through a port in her stomach.
For the last year, Kaitlyn has administered the drug to herself at home, the first person in the State to be able to do so, but even after cutting out the monthly expense of traveling, her treatments still cost over $4,500.00 per month. It is a devastating disease to the families of those suffering from it as well.
Thank goodness our Kaitlyn doesn't have to be isolated in a sterile bubble like David Vetter. The medical community has come a long way since then, but it takes money and research. The Immune Deficiency Foundation is having a fundraiser drive, and Kaitlyn is hoping to raise $1,000.00 for the IDF between now and June 15, 2009.
The theme of the fundraising project this year is "Think Zebra". In medical school, doctors are taught that "When you hear hoofbeats, think horses", which means they focus on the likeliest possibilities in making a diagnosis. But we want the medical community to sit up and take notice: Just because you hear hoofbeats doesn't mean it's a horse. It could be a zebra! CVID is a very difficult disease to diagnose, which is why IDF says it is a zebra instead of a horse.
For every $10 donated, the donor will receive a zebra print bracelet inscribed with the foundation's name. I hope you will consider making a donation in honor of my niece, Kaitlyn Moseley, to help her further the fight against this horrible disease, or in honor of the healthy children in your life.
And please remember Kaitlyn and the other children who suffer from this disease in your thoughts and prayers.
Kaitlyn is a beautiful, smart, witty, vivacious, and charming young lady. She has actively campaigned to bring attention to this horrible disease. She has served as a member of the National Teen IDF Board and traveled to Chicago last year to speak at the convention. She also campaigns for blood donations to the Red Cross, and if you are not able to make a monetary donation, I hope you will consider making a donation of blood in her honor at your local blood bank or at the next blood drive. It takes 45 pints of blood to harvest enough plasma for ONE treatment.
Thank you so much!
IDF Think Zebra Campaign
The Red Cross