“Life is often out of our control”

I read this article today at Scotsman.Com because Kennedy’s Disease was mentioned. The title was: On Christmas Day I smiled but I couldn’t help but look at Vanessa and wonder if this was her last Christmas - it was heartbreaking.

The story is about a couple’s daughter who was diagnosed with cancer. The subject struck too close to home.

The article caught my interest from the beginning with this lead: “The only hope Connie and Chris Riddle have of saving their daughter from a rare form of cancer is treatment in the USA costing £500,000. Maria Croce meets a couple determined to give their little girl the best chance they can.”


I have mentioned before that there are far worse things than Kennedy’s Disease and cancer is always near the top of the list. And, even worse, it attacks your child. “Just a few days earlier life had seemed to be getting back to normal. It looked like Vanessa had beaten a rare form of childhood cancer, neuroblastoma, after extensive treatment, because she’d been in remission for 16 months. But just before Christmas a scan revealed the cancer was back.”


“Connie had already realized the fragility of life after her father was in 1995 diagnosed with muscle-wasting Kennedy’s Disease and spent his later years in a wheelchair until he died, four years ago, at the age of 72. It is completely unrelated to Vanessa’s cancer – but Connie discovered she is a carrier of the hereditary disease that only affects males in adulthood. “I chose not to have the tests when I was pregnant with Olivia or Vanessa,” she says. “I thought even if I’d discovered I was carrying a baby boy with the condition I would still have had him.”

Yes, much of our life is out of our control

Those of us living with Kennedy’s Disease know that some things in life are just totally out of our control. At the same time, there is hardly anything worse than the totally helpless feeling that overwhelms your body, mind and spirit when your child is diagnosed with cancer. I know, because at two years old, my son was diagnosed with an aggressive (malignant) brain tumor that was strangulating his upper vertebras causing seizures.

Fortunately, they caught it early, we had a great neurosurgeon, and after surgery and 33 massive cobalt treatments the doctors felt they got it all. Five years later he was given a clean bill of health. My son is now forty-one and even though he doesn’t remember much about that time in his life, it is still a vivid memory to me.