Tonight at 10, on Real Sports with Bryant Gumbel, Boomer Esiason and Frank DeFord sit down for a talk. The talk is about their connection and Cystic Fibrosis.
I remember so well when Jack was diagnosed with Cystic Fibrosis.
Let me go back, Jack was just sick, he was always sick. His doctor insisted I was over reacting, my son simply had an older sibling at home. Interestingly, she was never sick. One day I brought him home from his doctor, who again assured me I was over reacting. My british friend Nikki, no medical training, took one look at him and said "that child belongs in hospital". I took Jack to a new doctor that afternoon, she saved Jack's life. She sent me straight to Columbia. Jack had a double ear infection, one had perferated, conjunctivitis and a collapsed lung. Dr. Quittell took care of my son that day. She told me "Liz I would like you to bring Jack back to test for Cystic Fibrosis. I do not think your son has this so do not google". Being the good catholic girl I am I listened. So three weeks later, when I was sitting in her office after Jack failed the test, tears streamed down my face when Dr. Quittell said "things are so much better now, some children with CF actually live to 18 and go to college". I had no idea this disease was terminal. That day had found out I was pregnant again.
After that, I went straight home, and I googled. I am across a book about a girl who had CF. I ordered it. I sat down to read Alex the Life of a Child and did not get up till I was finished. The book was written by Frank DeFord. I later found out he was a famous sports writer. His book is so beautifully written, I cried through it. Without holding anything back, Frank DeFord told the story of his princess Alex who died when she was 8. I guess what I liked best about the book was the Mr. DeFord was so mad about this disease. I knew exactly how he felt.
I met Boomer Esiason at Columbia. His son was being treated by Dr. Quittell, Jack's doctor. He was lovely. Not long after that, I heard Boomer speak for the first time. He and his wife Cheryl were living in Cincinnati. He was the QB with the Bengals. After reading Frank DeFord's book they decided to raise money for Cystic Fibrosis. And with tears in his eyes, he described the call from his wife four years later. He was in NY, just signed with the Jets, he had to come home Gunner was sick. Gunner had Cystic Fibrosis.
I admire both of these men for many reasons but mostly one. They stood up. They have raised money and awareness for Cystic Fibrosis and in doing so have changed the outcome for children with this terminal disease. They are on the brink of something so exciting. It will change the lives of children and their families with Cystic Fibrosis. Going forward, this will be the blueprint for other children's disease.
Mr. DeFord lost his fight in 1980, yet he has continued to make appearances and speak on behalf of CF Foundation. I was fortunate enough to be a Cipriani's in NYC to hear him speak. He told a story about his beautiful daughter Alex. She was small, most children with the disease are small in stature, she was lovely, beautiful, smart, funny and sensitive. Mr. DeFord talked about one night in particular when he was having a conversation with Alex about princesses, Alex's favorite topic. Alex told her father "I could never be a princess". Her father asked "why Alex, why can't you be a princess". Alex replied, my crown would fall off when you did PT in the downward positions on me." PT is something every child with CF has done everyday sometimes three times a day. You hold them in many positions and pound on them to get the mucus out of their lungs. Some of the positions are in the downward position. which of course if you were wearing a crown, it would fall off. Everyone in that room had tears in their eyes.
A lot of money was raised that night. Mr. DeFord could easily have walked away when his fight was over in 1980. He did not. He stood up.
Boomer Esiason, professional athlete stood up. His foundation has done so much for children with Cystic Fibrosis. He has tirelessly put his family on the forefront of this fight. He has accomplished more than he will ever realize in changing the hopes and dreams of children with Cystic Fibrosis. He is a hero, he stood up.
Children's diseases in America are grossly over looked by corporations and the government when it comes to funding. If there is no money, there is no progress. I followed the blog of mother. Her child had a rare form of cancer. There was a drug that would have helped her son, but no drug company would produce it, the drug company could not enough money. Her son died.
So if you have the opportunity to stand up, to make a difference in the life of a child or a family with a child with a disability like CF or Autism, or Cancer, stand up. Make a difference. Then go home, hug your children.
Tonight I will be watching Real Sports with Bryant Gumbel. I admire these two men. I admire them for their compassion, the drive and determination, but mostly I admire them because they stood up. These men will touch your hearts.