WHO I AM: Roger

WHO AM I: Roger

MARCH 1999 (20 years ago)My brother Prescott and his wife Deb gave birth to their 4th child, Julia. I am her uncle.

What is usually a joyous occasion was suddenly overshadowed as it was soon discovered that Julia was born with a somewhat rare genetic disorder (~1000 new cases per year) called Cystic Fibrosis (CF). Fortunately Google was invented one year earlier (1998) so I spent the next few days learning all I could about this disease. I could type thousands of words, but in a vastly oversimplified explanation, CF progressively clogs up the lungs, eventually rendering them useless. 

My heart sunk and my spirit was crushed

As it is a genetic disorder that is usually only discovered after a few years (Julia's CF was discovered by newly mandated blood screening - first case in MA), there was a better than 50% chance that one of her 3 other siblings (Hope, Billy or Kevin) may have also inherited the disease so testing was immediately done within a few days. Normally my memory is poor but I still specifically remember getting a phone call at work from Deb's mother Gigi asking if I had heard the results of the testing for her other 3 grandchildren, breaking down and sobbing in fear of the unknown.

I have rarely felt as helpless as that moment when I couldn't answer her question.

I have rarely felt such relief as when I found out that that they didn't have CF. 

My heart rose and my spirit was rekindled with the good news. For Julia, I blindly took solace that there were varying degrees of CF, convincing myself that she wasn't "that" sick and that everything would be ok. 

As Julia grew up, she exhibited some of the signs of CF (cough, asthma like symptoms, etc) but nothing that was readily apparent for someone like myself who believed everything would be fine. When I took the picture below, I remember thinking There's nothing wrong here folks and  Julia's smile confirmed it for me.

But I was wrong...

Julia's family lives on Cape Cod, about 1.5 hours from Childrens Hospital in Boston. As my wife and I live about 20 minutes away from Childrens, Deb would call and ask if they could stay the night before, to shorten the drive.

As Julia grew older, the calls became more and more frequent.

MAY 2008 (11 years ago)I was out on the deck, cooking some ribs, when another one of those calls came in. Having confirmed their reservation, I hung up the phone and got back to a much more important matter at hand: Having found out I didn't make the cut for the upcoming season of The Biggest Loser, I decided I needed to gain moreweight so I could have a better chance to make the cut the following season.

And that is when I had my epiphany.

Unlike Julia, I always had the ability to make myself healthier, to try and turn back the harm that I had done to my body and save myself. I suddenly realized that I was not immortal, that my time was quickly running out and I needed to change. And at the same time, I realized that Julia's time was also running out and I needed to do anything I could to help change her life.

It didn't really make much sense, but it was precisely at that moment that I committed to run the 2009 Boston Marathon and raise money for Cystic Fibrosis, in hopes of finding a cure and help save the life of my niece.

I now realize that it was on that day that Julia helped save my life. 

As I trained, I constantly kept Julia in the back of my mind. If she had to fight CF, then I was going to do my best to fight it as well. I wrote her name on the front collar of all my shirts: When I needed strength, I touched her name and a bolt of energy shot through my body, carrying me forward. 

My heart rose and my spirit was rekindled.

APRIL 2009 (10 years ago)On April 20, having lost 120 pounds, I ran the 2009 Boston Marathon. In my mind and on my shirt collar, Julia was with me every step of the way. 

MARCH 2019 (now) Julia is now 20 year old. Due to difficulty breathing, she was brought back to Childrens Hospital in January of this year. Her lungs have done their best to keep the breath of life in her, but this time the disease is proving itself to be unrelenting. She is currently on oxygen 100% of the time and at this point has accepted the fact that she will never leave the hospital until she receives a lung transplant.   

And once again, my heart has sunk and my spirit is being crushed

But just as I never gave up 10 years ago, I believe 100% that she will receive her lung transplant and live the life she was supposed to live.

The cost of a double lung transplant is over 1 million dollars and while insurance does cover most of the operation, Julia's family will be responsible for well over $100,000 in related costs  including travel expenses, 3-4 months of temporary housing depending on where she gets the transplant, medication, continuous therapy and numerous other expenses too long to list for years to come.

I am sincerely asking you to please consider donating to COTA in honor of Julia and her familyto assist with transplant-related expenses.

COTA (Children’s Organ Transplant Association ) is a 501(c)3 not-for-profit organization (established 1986 and a 5 star Charity Navigator rating) and is the only organization of its type that charges no fees for its services. I have confirmed that 100% of all funds donated will go to the transplant-related expenses of families to offset those expenses and that your donations will be compliant with the IRS.       

Comments

  • Brax

    Roger... Both you and Julia are such a huge inspiration to me.. thanks for telling your story!

  • Anne Adams

    Roger, this is the greatest and the most heartfelt message from you. Prayers from all of us that Julia gets a lung transplant soon!

  • Dave Gilson

    I plan to be in Boston to watch Julia & her new lungs cross that Finish Line with you Roger! Prayers for Julia, God is good!

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