PAY IT FORWARD

It is hard to believe I have a house filled with teenagers now.  It seems like yesterday I had a house full of babies.  Our house was a happy house, filled with laughter.  Jack's diagnosis came early on, seven months and with his diagnosis came fear.  Pretty early on, I learned I was not alone on this journey.  This train, my train, was filled with generous people. They were neighbors, mothers, athletes, businessmen and strangers.   Their giving arms where much longer than their taking arms.  What they have accomplished is nothing short of a miracle.

Before Jack's diagnosis,  I was blissfully unaware that disease in our country was a multi million dollar business.  I just assumed, if your child was sick,  there were doctors and scientists working to cure it.  I could not have been more wrong.   If they have a way of getting rich, they would work to cure your child's disease.  I suppose I feel fortunate that my child has a disease that there has been a lot of money raised and as such a great deal of progress is being made.  Will that progress be in time for Jack, that I do not know.

So along with keeping Jack healthy until there was a cure was the added responsibility of raising money and awareness.  This journey I started fifteen years ago, continues today.  Cystic Fibrosis, as is the case with most children's diseases, gets very little corporate funding.  Why?  Our children do not grow up, they do not become the CEO of Pepsi where they can command millions of dollars in corporate funding to their favorite charity.  Most donations to the Cystic Fibrosis Foundation are personal.  My fundraising career  started out with a cocktail party.  I divided my friends into three teams and challenged them to raise money for the Great Strides Walk.  The winning team received a case of wine.  I hoped for $5,000 we raised close to $100,000.  The checks rolled in from all over, some of the most unexpected came from families with no connection to mine.  One check for $25 came from a an electrician and his family in the next town over. Someone with a giving arm longer then his taking arm.  

Along this journey, I have met so many people who have donated money, time and anything else they could to make a difference in the life of a child with Cystic Fibrosis.  And for that I am truly grateful.  While a diagnosis like Cystic Fibrosis leaves you wondering why my child or any child for that matter. The journey you set off on will change you for ever.

Two men have changed this direction of Cystic Fibrosis, Frank DeFord and Boomer Esiason.  Each has gone so much further with their commitment to this disease than one could ever expect.   Frank DeFord lost his fight 30 years ago when his seven year old daughter died from Cystic Fibrosis after an exhausting fight.  He not only continues to make appearances, he gives speeches from the heart.  He shares his daughter Alex with everyone in that room.  After Mr. DeFord speaks, there is never a dry eye.    To relive his fight which ended tragically must be so difficult.

When Boomer son was diagnosed with Cystic Fibrosis he shared his second call was to his friend Frank DeFord.  Mr. DeFord replied that there is a reason for this.  Knowing that someone with Boomer's fame, kind heartedness and dedication would change the face and direction of Cystic Fibrosis.  It has.  For that I am grateful.  But I wish medicine in America did not require someone famous to have a child with a disease to cure it.  Not to take away what both Frank DeFord and Boomer Esiason have done for every child with Cystic Fibrosis.  They have given them a fighting chance.  They have given every mother of a child with Cystic Fibrosis hope.

While these gentleman have raised hundreds of millions, I would like to thank the electrician for his $25 check and his blessings.  You have taught me that every little bit makes a difference, it makes in impact, it gives a mother faith and hope.  Your generosity touched my heart.  I am not in this fight alone, I have the love support, prayers and blessing of so many.  I only hope that I can pay it forward in some small way to another family that is struggling with a child with a disease.

There is little hope for changing how disease are funded in America.  But now I have hope in the human spirit.  I think most, when called upon, will step up and do what they can.   I always say that I wish Jack did not have Cystic Fibrosis, after this year, I wish this more than ever.  It has been a horrible year.  But I am grateful for the journey,  along the way have met so many whose kindness, generosity, dedication and spirit have given me faith, faith in my son, faith in my community, faith in Jack's future and every other child with CF.  Thank you for that. #cysticfibrosis #rockCF #children #love #Faith #Boomeresiason

REAL SPORTS WITH BRYANT GUMBEL

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.