It’s always an exciting time to attend the Annual Cystic Fibrosis Volunteer Leadership Conference. This year we were filled to capacity…an overwhelming 500 in attendance.
Every conference hour is filled with new fundraising ideas, updates on the latest scientific research, and meeting more of my CF family.
We all know that sleep is limited but hearts are not.
500 strong
500 voices
500 solely focused on ending CF
It had to be one of the best conferences in 20 years…the number one reason: VX-770…a.k.a Kalydeco..a.k.a ‘The Golden Ticket.’
Kalydeco is the first drug ever…EVER…to directly impact the disease at the protein level. The downside, it only affects 4% of those with CF; they have to have at least one copy of the G551D CF mutation. Think of it this way, it’s like insulin to diabetics; they still have diabetes, but now they have a ‘drug’ enabling them to have a better quality of life than ever before.
That was our Star…and we celebrated…for about 5 minutes.
Then we got back to work, back to business, back to urgently acquiring that ‘Golden Ticket’ for the other 96%…who are still in the fight of their lives.
Marc and I left the conference on such a high. There was so much optimism and hope for the future. The collective ‘we’ had cracked the code and now knew the finish line was in sight.
Then I got the call.
Eric called to say he was coughing up blood, his lungs hurt, and he had already called the doctor. He informed me he was going into the hospital. He was in NY…and Marc and I were not.
Almost 21, Eric is extremely independent, unbelievably determined, and undeniably my hero.
At 43, my normal fearless demeanor vanished and I’m overwhelmed with guilt that I’m not there by his side. Still, I’m incredibly impressed at the responsible man my precious little boy has become.
And though I’d be on the very next flight, it was quite obvious he didn’t want or need me there. He is an adult who is balancing college, work, and a very full social life. He also knows how hard this is on me, my first time EVER not being there with him during a hospitalization. He calls, texts and reassures me with answers to all my incessant ‘motherly annoying’ questions. And he always ends with, ” I got this, Ma…and I love you too.”
My son, my hero…taking on his world, his way. I couldn’t be more proud. I just hope he knows while he’s taking on the world, he IS my entire universe.
Congratulations CF community of the spectacular progress and your passion and commitment. Margarete, no truer words have been spoken about motherhood, parenthood and the evolution of our children and our relationship with them!!! <3
Hi Margarete,
Again, it was great finally meeting you the other night. When I read your post above, I thought of myself. Eric sounds a lot like me. I too was a strong willed college aged young man, not too long ago. Despite my Mom being the best CF mom ever, I always wanted to do things on my own. Part of this disease is exerting some independence. I developed many hemoptysis episodes in College and after. I often admitted myself to the hospital for Tune-ups. I remember many times being in-patient for Iv’s and feeling a sense of independence knowing I was there on my own. In college, I would wrap up my picc line and “sneak” out of the hospital so I would not miss my intramural softball or basketball game. Haha, don’t tell the doctors. So, let me know if you ever need anything. Tell Eric he is free to drop me an email if he ever needs to vent or just talk with someone who seems to be very similar to himself in his challenges he has faced.
good luck,
Mitch