Dear Michele, Meghan, Lynn, the researchers at UNC and everyone else involved in the PCD Foundation,
We can’t thank you enough for all you do for the PCD Foundation. My husband, Kevin, and I were so glad we made the trip to Buffalo to attend our first Family Day. We learned a lot which led us to a better understanding of this disease. Equally important we met families who have lived the same nightmare we have lived for years, the misdiagnoses, the fear of the unknown, the stress of dealing with a chronically ill child and finally a diagnosis of a rare genetic disease. Talking, laughing and crying with our new friends was so therapeutic for Kevin and I.
We worried about our son Ryan from the minute he was born. He went through 8 surgeries, countless illnesses, doctors’ visits and was finally diagnosed December, 2008 at the age of 12 1/2 years old. I was scared and probably depressed when Dr. John Welter diagnosed him. I teach full time, have four children and didn’t know what this diagnosis would mean for Ryan and our family. Thankfully my sister- in-law went on-line and found your PCD Foundation. It was a relief to see your PCD website and have some information and guidance. My sister-in-law even called and I wonder if she spoke to Michele, in any case, the kind and caring person suggested we get in the University of North Carolina Center of Rare Diseases’ research study. It felt good to be doing something and within four months of Ryan’s diagnosis we were at UNC, sitting with a team of doctors and researchers for five hours. When do you ever get that kind of attention? Ryan’s lung functioning is within the normal range so that was good news and the best news was he should absolutely continue to play all his sports, baseball, football and basketball. That’s all Rayn wanted to hear!
I feel compelled to tell you about what a special person my son is. I wonder how that works, God thinks, “ok I’m going to give him this nasty, chronic disease but an amazing personality of perseverance and compassion to go with it”. When Ryan was only seven years old he came home from swimming with red blood dripping from his ear. Our youngest was a newborn, my husband was working and I thought I stayed very calm as our doctor in New York City told me to bring him in. We live over an hour away from NYC. As I was helping Ryan wash his hair so his ear wouldn’t get wet he quietly said, “I wish I didn’t have bad ears.” I asked him why, figuring he was going to say because he didn’t like wearing the ear plugs and ear band or that he had to go the Dr. but no Ryan answered, “Because you have to worry about me.” I didn’t expect that but I should have, coming from Ryan. Right after we got the PCD diagnosis I was talking to Ryan about it, trying to be brave and holding back tears and he says to me “Mom, did you ever think life gives you what you can handle?” In another conversation Ryan reassured his Dad telling him that in his life time there will be a cure for PCD. So with that said it seems to be the Clark’s destiny to help build awareness and help raise money for PCD research. Michele pointed out the total of CF donations but noted that there were many small donations made to equal a substantial total. Let’s do that for PCD!
Thank you again PCD Foundation.
Traci Clark
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