Monday, March 10, 2014


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

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