Children with PC

At the recent PC Patient Support Meeting in Dundee Scotland I spent much of my time with the children who have PC. I was amazed at the resilience of these children with PC. These kids are bright, happy and fun to be with. I was also impressed with their parents who have instilled good self-esteem in their children, regardless of the challenges these kids face growing up with PC.

The experience made me thankful for my own parents. Though I was shy, and in many ways insecure about myself growing up, I always had a good self-esteem. That may seem a contradiction. But walking awkwardly, or with crutches and having what I thought were ugly nails (probably because people told me I had ugly nails) made me feel insecure about myself. However, regardless of what people might have thought about me or even said to me, I liked myself and always knew I was a person of worth. I thank my parents for that.

At the patient meeting, I was able to spend time talking with many of the parents with PC children, particularly those parents who have children with spontaneous mutations of PC (these kids are the only ones in their family with PC). I was able to answer lots of questions as we shared experiences about raising a child with PC. Many parents also shared their feelings as well as challenges both they and their child have faced and how they’ve coped.

Again, I thought of my parents. I, too, am a spontaneous case of PC. There was no PC Project when my parents went from doctor to doctor trying to determine how to best care for me. They were basically on their own as they tried to figure out how to deal with nail infections, painful blisters, special shoes, social situations and so on. How they would have loved to have talked with other parents or someone else with PC. How blessed we are now to have this opportunity.

The parents I met at the patient support meeting have done incredibly well with their PC children. Their kids touched my heart with their smiles, talents, and undemanding love. These children are amazing individuals and a joy to be with. That doesn’t mean the heartaches and trials aren’t there. But I salute great parents and their awesome kids. What a privilege to meet them all. I think it’s wonderful that we have a resource to be together and to help one another while we raise our PC children. Thank you PC Project!