Recently, I spontaneously shared some personal information with the various liturgical ministers who were gathered for one of the liturgy training sessions. It was the first time I’d done such a thing. This “first time” exposé was prompted by recent multiple inquiries made by individual school children. I find their innocent curiosity refreshing and do not shy away from responding. Since it is obvious to the children that there is something different about me, I’d like to share with you why this is so.
I was born in the spring of 1964 with a rare (about one in a million) genetic skin disorder called Lamellar Ichthyosis. In simple terms, I am unable to perspire and have abnormal skin cell bonding which makes the skin inelastic, dry and easily torn. This is why I appear to many to be older than I am and why my eyes are often irritated and watery. At my birth I was not expected to survive and was immediately baptized. Apparently, reports of my demise were greatly exaggerated J. Three full months later I finally went home to three other siblings and one more who would join us a year later. Obviously, it’s not a contagious condition; however it is an extremely irritating one with nearly 24 hour itching. Much of my childhood was spent going from one doctor and medical conference to another with very little real relief. There has been some research over the years and there appear to be some real possibilities on the distant horizon. Although in my youth I relentlessly begged God for a particular miracle, but never received it. As the years have gone by however, I’ve realized there have been many miracles in my life which were far more valuable. This cross has been a gift and I would not change it even if I could. I welcome any questions you might have. More information can be found at www.firstskinfoundation.org.
On a Related Note: The fight for the lives of millions of innocent children is personal to me for many reasons. Just one is that most children with birth defects are being aborted. Currently it is estimated that 90% of Downs Syndrome children in the U.S. are aborted (the number is almost 100% in Europe!). Thousands of perfectly healthy children are also being aborted do to fetal misdiagnosis. If my situation were just a little different, I’d easily be among those statistics. ALL children are a gift from God and we have absolutely no right to decide who should live and who should die. We have no right to decide who would have a good quality of life and who wouldn’t.
Let us pray for all mom’s, especially those who are given the option of aborting “problem pregnancies”. May we all live the gospel of life.
