Being the grandparent of a child with Cystic Fibrosis or another chronic illness is not a place I ever thought about being before Nick came into our lives. But into our lives he came (our first grandchild) with these big brown eyes and tiny little body. Nick came early weighing in under 5lbs. The doctor noticed the first day that Nick had a problem with his bowels. Second day found us at Wesley in Wichita with Nick in surgery, we thought to repair his bowel. When the doctor came out of surgery he was very blunt and with a cold bed side manner told us he might live to 21. When the Cystic Fibrosis Foundation was founded in 1955, few children with CF lived to attend elementary school. Nick is now 18 and the Cystic Fibrosis Foundation has made "Great Strides" in their research and the media age for an individual with CF is now 37, for us that is awesome! We have been hearing of meds that may make that number even bigger!
"Great Strides" is the name of the walk that Cystic Fibrosis has every year to raise money for research to find new meds and treatment for the disease. The one for the Wichita area is coming up May 1, at Sedgwick County Park, 9:00 am.
We still raise money for the Cystic Fibrosis Foundation every year but we have not attended the walk in the last couple of years because Nick would rather not go. You see there are usually teams there raising money for a loved one who has passed on and their t-shirts say in memory of. I understand why they would want to do that but to a young person living with that thought is hard enough without seeing it on shirts. I am hoping with time he will feel like returning to the walk but I'm not walking in his shoes, only mine.