Tonight I met Lee Woodward. The evening, in honor of her new book. Evenings like tonight give me hope. It is so inspiring to meet a mother and wife who is a member of the club that no one wants to be member of, yet she prevails and makes sure others benefit.
Her husband suffered a dramatic brain injury. With love and support, her family is in tact and she is making sure other families faced with the same injury have the support they need.
Once Jack was diagnosed with Cystic Fibrosis, I hit the internet, the same internet his doctor had warned me about. Most of what I found did nothing to help me. I was looking for a cure, a reason, an explanation. I was told "the lord only gives what you can handle". Clearly, that was a huge mistake. As my father, my mother and brother will tell you, I was the week link in our family chain.
Then I was told, if the outcome was not in your favor, then they (your baby) was in a better place. What is a better place for a child than with their mother.
Finally I read Alex, Life of Child by Frank Deford. His anger resinated with me. And it helped, it helped me to know that like me, he was so mad at this disease.
Some think we have great health care in America, and yes if you are healthy we do. Healthcare is business. If someone can make money off of your child's disease, you are in luck, the odds are in your favor, if not, oh well.
I had the honor of meeting Frank DeFord. His daughter died from Cystic Fibrosis at the age of seven. He took my hand and tried to put me at ease. He said "Liz your children have a much better chance. " I said "We are all members of a club that no one wants to be a member of."
I thank Frank Deford for continuing to do so much for the Cystic Fibrosis Foundation. Long after he lost Alex, he lost his fight, he continued to fight. And because of him my baby has a much better chance. I wish I could say I would do the same, I hope I would. I hope I would continue to fight after I lost everything that was important to me. I admire and I thank him for all he does for Jack and all the other children like him.
I also know, every child born deserves a chance. No matter what the cost or how much that drug company is going to make. What is the cost of that one child?
My dream is that every member of this club will get their the call. The call to say, your brother, your sister, your husband, your wife, your mother, your father, or in my case, your baby is cured. Your fight is over.