Wednesday, April 27, 2011

A Night for a Cure

Tonight I am hosting a party at the Rye Road house, to thank everyone for the love and support my family has received especially this past year.

Also I am asking for support for the Cystic Fibrosis foundation. THe CF foundation has made great progress in finding a cure for Cystic Fibrosis. It is also a model for all children's diseases, as raising money is a challenge. Children's disease rarely receive corporate funding. Children with CF do not grow up to be the CEO of coke, they die.

Thirteen years ago today, my ten month old Jack was diagnosed with Cystic Fibrosis, at the time I was five months pregnant, Kate too had CF.

Jack had been sick and we ended up at Columbia Presbyterian Babies Hospital in March 1998. Dr. Quittell took care of Jack that day. In passing she mentioned doing a test for CF. She told me "do not google it, I do not think Jack has it". In fact there was a 95% chance he did not. Being the good Catholic girl I am, I did not.

Two weeks later, after the test came back positive, the first thing Dr. Quittell told me "Liz, many children with Cystic Fibrosis are reaching their 18th birthday". Tears streamed down my cheeks, I had no idea this was a terminal disease.

Of course the first thing I did when I got home was hit the internet. I called Dr. Quittell daily with "cures" I had found. What was I thinking, the top CF specialist in the country, she treats Boomer Eisiason's son, had missed something. She politely took my calls for about a day than she told. "Liz I will call you when there is a cure".

So I started waiting, waiting for the call, waiting to see if jack and Kate would live or die.

I decided early on that I wanted my children to be known as Jack and Kate who have CF, not those two kids with CF Jack and Kate. And we set out to live our lives. But in the beginning, in the dark night, I would rock Jack to sleep and say "stay with me Jack, do not leave mommy". Having a baby with a terminal disease is so terrifying, I was so afraid he would be scared and alone if..

This past winter has been difficult for Jack and my family. He has spent over four weeks at Columbia Presbyterian hospital. Times like these are so difficult on my whole family. Sam my oldest shows such strength and resolve. She is an honor student, an athlete and has my heart. Kate, just 13 months younger than Jack takes over the role of caretaker and companion. She plays endless games of Life, watches every Jack Sparrow move and of course the Simpsons with Jack. And Jack.. Jack has seen more pain and suffering than most do in a lifetime.. yet he is courageous, strong and most off all forgiving. He is so much more forgiving of this disease than I am. He always says.. its not that bad.. i will be out in a few days. And even with a pick line in his arm or a tube down his nose, as soon as he is able he heads off to the skate park.

During Jack's last hospitalization I found myself whispering in his ear when he was asleep. "stay with me. Don't leave me". This time it was not the fear that he would be scared or alone, it was my fear. I do not know how to live without Jack.

There is still no cure for Cystic Fibrosis, all I have is hope. I am surrounded by that hope tonight. I know that I may never get that phone call from Dr. Quittell. But someday, a mother will get that call and this fight will be over and we will have won.

support my family in the fight for a cure: Great Strides .. Team Clark Team Leader: Elizabeth Clark


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