The 5%, Cystic Fibrosis and the Corona Virus.

Georgetown sent all their students home in the wake of the Corona Virus Pandemic.  Well most.  Kate, my beautiful daughter, is staying.  You see Georgetown felt their students were safest at home.  And for the most part, they are.  Kate has Cystic Fibrosis and home is Westchester County NY.  The largest cluster of the Corona Virus in the Country.  Georgetown decided it was not safe for Kate to come home.  Which is heartbreaking.

Why is the largest cluster of the Corona Virus in Westchester, NY?  World travelers, family in China, Italy?  No, it is the home of one arrogant lawyer named Lawrence Garbuz, who having traveled through a NYC airport in February, long after the virus was making headlines, got sick.  He went on to infect hundreds. I will get back to that.

My children, diagnosed early on with CF, are no strangers to staying home.  I remember when I was first told about how their Cystic Fibrosis would manifest itself.  They would get repeated lung infections. The infections would damage their lungs, so much so that their lungs would not function.  I came up with the perfect solution, they would never leave the house.  I would keep them safe.  That worked well until Jack learned how to walk.  He walked and then he ran.  He ran right out the front door,  kate followed and from then on there was no holding them back.

I learned to try and keep them safe.  Relying on those around them to do the right thing.  Sick? stay home.  Coughing, fever?  Stay home.  Be responsible.

I have spent their lives keeping them safe.  Jack has struggled, but two months ago went on Trikafta,  a life saving drug for those with Cystic Fibrosis.  I thought I am home free.  And then the Corona Virus hit.

It only affects the five percent. That is what we were told early on.  Let me tell you something about the five percent.  When Jack was seven months old, they wanted to test him for Cystic Fibrosis.  He had been so sick.  I was told "Mrs. Clark, there is a 95% chance he does not have it."  He did and he does.  So I am familiar with 5%.

Back to the lawyer.  Most families are together during this crisis.  Mothers are looking after their children who for the most part are not at risk.  I am not. I am mother with a child who is most at risk.  She is not here.

The lawyer, very symptomatic, refused to stay home. He attended three large gatherings in two weeks, a wedding, a funeral and a bar mitzvah.  He continued to travel on metro north.  He is responsible for the largest cluster in the US.

To you Lawrence Garbuz, I hope the party was worth it.

#cysticfibrosis #coronavirus #coronavirusny 

HELLO DARKNESS MY OLD FRIEND

Hello darkness my old friend, I've come to be with you again.

A couple days ago I got a call from Jack's doctor, he had been approved for Trikafta.  The game changer as the CF community calls it.  The miracle drug.  The call I have been waiting for for 22 years.

Let me back track a little bit.  Jack and Kate were diagnosed in March 1998.  Diagnosed with Cystic Fibrosis.  I remember vividly sitting in the Dr. Quitell's office at Columbia Presbyterian Hospital in Washington Heights.  One month early, I had taken Jack ,who was seven months old, to Columbia for a chest x-ray.  He had been so sick. Dr. Quitell, by some miracle, was the attending.  She was also the head of the Cystic Fibrosis Center at Columbia.  She said "I do not think Jack has CF, but I want to do a sweat test.  Do not read anything about this in the meantime".  I followed orders, I had no idea what Cystic Fibrosis was. Well not until Jack failed the sweat and I was sitting in her office.  The first thing Dr Quitell said "Mrs. Clark many  children CF reach their 18th birthday now and some go to college."   Tears streamed down my face, all I could say "what are talking about?".  The rest of that day is a bit of a fog.

I got home.  I hit the internet, I tried to find evidence that she was most certainly mistaken, my son, and my unborn child did not have CF.  Yes I was expecting Kate and she too would be diagnosed with Cystic Fibrosis.  I called Dr. Quitell daily.  Finally, one week in, she said "Mrs. Clark I promise when there is news of a cure, I will call you."

I am not a very patient person so while I waited for her call, I told our story.  My community, my friends, people I never met came out to support our family.  They came to walks, golf outings, cocktails parties.  Their compassion and willingness to give to this day amaze me. And I am forever grateful.

Along the way, I met Frank DeFord.  He is famous sports writer, his daughter died from CF at 8.  He continued to fight, raising money and awareness.  I met Boomer Esiason, who had chosen to support Cystic Fibrosis as a player for Cleveland. In a twist of fate, three years later, his son was diagnosed with CF.  He has worked tirelessly to raise money and awareness since that date.

The years were harder than I imagined.  Jack is no stranger, to hospitals.  Throughout his twenty two years, he shown me how to handle disease with grace, dignity,  perseverance, and courage. 

Almost twenty two years  to the day he and Kate were diagnosed, I got my call.  Well it did not go that smoothy, in the past two weeks there have been a few phone calls, tears, direct conversations, but yes I got my call.  Yesterday at 10:30 the Fedex guy showed up at rag & bone and delivered Trikafta.

Trikafta, it's been called the game changer, the miracle drug, giving most with CF a chance at a future.  Why I am terrified?  This is it.  This is all that is coming in Jack's lifetime.  What if it's not our miracle?

I've been very honest about my belief in God in my blog, depends on what day you are talking to me.  Today I believe. I believe in faith. I believe in hope, I believe in love, I believe in thoughts, I believe that collectively, we can accomplish anything if we try hard enough.  So take a minute today. Do you know someone battling a life threatening illness, addiction, depression?  Take a moment and think of them, believe for them, hope for them.  Believe their game changer is on the way too.


#cysticfibrosis #trikafta #boomeresiason #live #cff #BEF #ccf #cure #fighton #Cysticfibrosisfoundation #tastesofsalt #lungs #lungfunction #vertex