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


Tuesday, April 12, 2011


Jack and me

Jack was diagnosed with Cysitic Fibrosis thirteen years ago today.  At the time I was told "many children with CF were reaching their 18th birthday".  Jack is currently 13, the idea that I would only possibly have five more years with this child is heartbreaking.

In the beginning, I just never wanted him to leave the house.  If he did not get a cold, he would live.  Of course Jack, as soon as he was mobile fled the house.  Anything with wheels would do, his sister's doll carriage, the baby was tossed out, his red plastic car, he even took the keys to my car when he was three.

Fortunately, the Cystic Fibrosis foundation is a well run, well oiled machine.  The progress they have made is remarkable.  Mothers today are told very different things about the future for the children.  However, the future is still uncertain for all children with cystic fibrosis.  The care involved is tremendous. Daily chest pt, airasoles, medication is just part of it.  Many are unaware of the time and work it takes to keep a child with CF healthy.  Sometimes that ignorance can be hurtful.  

Jack, like other children with cystic fibrosis has had his share of hospital stays.  None of them easy.  His pancreatitis has been unforgiving.  I have watched this child endure hours of pain, needles tests and weeks without food.  This january I watched him suffer through a near fatal pick line infection.  The courage and resolve he has shown me, well I am blessed to be his mother.  He has taught me how to be compassionate, loving, forgiving and a fighter.  

So in may I am walking for my beautiful boy, his sister kate and every other child and mother and father in this fight.   Join me?

And a heartfelt thank you for reading my story.

This is for you My Beautiful Boy:

Tuesday, April 5, 2011

Margaritas and the DesBerardos for a Cure

It has been a decade since my youngest children, jack on the right and kate on the left were diagnosed with Cystic Fibrosis.  Its been a decade...  At the time I wanted nothing more than a glimpse into our future, to see what it held.  I now know that would not have been a good thing.

Jack has struggled with his Cystic Fibrosis, and have told his story here.  I never would have guessed that having a sick child would be so difficult.  Emotionally watching Jack endure what he has physically has been heartbreaking.  He is my little boy.  At four he wore his bumble bee stripped rubber boots every day for a year.  He liked anything with wheels. He was always in motion.  After he was diagnosed I used to rock him to sleep and whisper in his ear  "Stay with me Jack, Stay with momma, do not leave me Jack".

This year when Jack was hospitalized with a near fatal pic line infection, I found myself saying the same thing to him.

What I know now, his life will be a struggle.  A cure?  Well that will only come with the kindness of others.  You see the only way to get medical research done is to raise money.  Corporate funding is non existent for Children's disease, for one simple reason,  they do not grow up to be the CEO of coke.  They die.

I am hosting a party, inviting friends and family and my favorite band is going to play.  Not only to raise money but to thank everyone for the love and support Jack and I received this year.

I do not know what the future holds for Jack.  That is something his doctors say to me all the time.  Its uncertain.  I am certain of one thing.  I have hope.  My hope is you.