- By Pam Stromsta. November, 2012.
Sept. 14 marked the fifth anniversary of our son's passing. Had he lived, Kenny would have been 26 on Oct. 31.
Patty Wood, president of NBIA Disorders Association, recently asked me if it seemed like only yesterday that Ken was here with us. I told her, yes, at times, but it also feels like forever since we held him, or heard his mischievous laugh or saw that gorgeous smile.
I remember finding Patty through the National Organization for Rare Disorders in the early 1990’s. There were only about 10 affected families then, but it meant everything to find another soul who understood what we were going through and was doing something about it.
Ken's gene mutation, which causes PKAN, was the first to be discovered by Dr. Susan Hayflick's team in 2001. That discovery was so meaningful for us.
Patty asked me to share what I would like others to know about this journey. I told her I'd try. But, I don't know if I can do Ken, or this experience, justice.
At first, it was overwhelming to learn my child had a life threatening disease and was given a prognosis of nine years. You never imagine you will have to learn to put a tummy tube in your child or care for broken legs, arrange for brain surgeries or live in a hospital for weeks. But you do it out of love, and you do it because you are given strength you never knew you had.
I believe each of us is born with a purpose. I think our children were born to show what real love, unconditional love, looks like. Ken taught me patience and to trust taking one day at a time. He showed me how to always give control of the situation to God, the only One who really knows what tomorrow will bring.
Ken taught those around him the meaning of courage and perseverance through times I can hardly bear to think about now. He taught his brother and sister that being handicapped was normal. Although I don't believe God causes a disease, He knew we would be born into a fallen world and He turned what was meant for bad into something beautiful.
Your child will reach many people, as Ken did in his all-too-brief life. He especially touched his cousin who was teaching in a foreign country and had a terrible accident. His leg was torn apart and the pain was horrendous. He told us later, I just thought of all that Ken had been through and told myself, "If Ken can bear it, so can I." When Ken’s cousin came back to the states, we let him have Ken's unused hyperbaric treatments, which he believed saved his leg.
Parents, from my heart, I want you to know, no matter how hard it was for us, it was worth every moment. You have reason for much hope. You have knowledge and access to research we couldn't imagine 20 years ago. Use the listserv, use those of us who have been there. I would be glad to talk to anyone, especially about the things I didn't know and learned the hard way, as well as the things I did know. We still try to attend the conferences in hopes of bringing our experience and support to others.
We miss our Kenny dearly, and we will never forget the love he brought us. Sept. 14 will always be a day to remember the joy, not the pain, and be thankful that we will see our son again.
Thanks to Patty, Dr. Hayflick and all involved in NBIA for fulfilling your purpose.