About Running with Danny

Running with Danny, Inc. was founded in January 2012, but the story begins way before that….

Danny Quesada was born with Cystic Fibrosis (cf) on November 4, 2000.  Cystic fibrosis (cf) is a genetic disease affecting the lungs and digestive system. The disease causes abnormally thick mucus, which results in frequent life-threatening respiratory infections and continued hospitalizations. The disease attacks the lungs scarring them with each infection, and the scarring is permanent. There is no reversal of the effects.  There is no cure and life expectancy is in the mid to late 30’s. 

Danny was diagnosed at 13 months old and immediately our family began to work with the Cystic Fibrosis Foundation to raise funds and awareness towards a cure.  In the third grade, Danny began to run cross country with his school, in April of 2011, during the Miami Lakes Great Strides walk to benefit the Cystic Fibrosis Foundation, Danny wanted to run the course.  We asked the participants, “Who wants to run with Danny?”.  On that day, Running with Danny was born.  We have used this platform to raise awareness and funds for medical research to find a cure for this disease.  We have a strong presence on social media and have held several 5K events.

As Danny’s disease progressed, the need for a Double Lung transplant became evident.  In March of 2019, Danny was listed for the transplant, while on the list, waiting for lungs, he developed pneumonia and was admitted into the hospital in late August.  Danny passed away on September 25th from the complications of the pneumonia and cf.

In memory of Danny and to continue His Legacy, we will continue the fight we started to end this horrific disease.  We will also be working to change the way patients with cystic fibrosis are listed for transplant, as well as promote organ donations.

 

What is CF?

Running with Danny, Inc. was founded in January 2012, but the story begins way before that….

Cystic Fibrosis is a genetic disease affecting the lungs and digestive system. Both parents must carry the defective CFTR gene and the child must inherit both genes to have the disease. Carriers are not affected by this gene in any way, it is estimated that 1 in 28 people carry this gene. The current CF population in the United Sates is approx. 32,000. The defective CF gene contains a slight abnormality called a mutation. There are more than 1,700 known mutations of the disease.

The CFTR gene causes the CFTR protein to become dysfunctional. Without this protein, abnormally thick mucus will stick to the cell walls of various organs. This results in frequent life-threatening respiratory infections and continued hospitalizations. The disease attacks the lungs scarring them each time with different bacteria and the scarring is permanent. There have been 4 huge medical breakthroughs in the treatment of this disease in the last 5 years. The FDA approved CFTR modulators for most of the known mutations which has improved the quality of life for some.

Cystic Fibrosis is a genetic disease affecting the lungs and digestive system. Both parents must carry the defective CFTR gene and the child must inherit both genes to have the disease. Carriers are not affected by this gene in any way, it is estimated that 1 in 28 people carry this gene. The current CF population in the United Sates is approx. 32,000. The defective CF gene contains a slight abnormality called a mutation. There are more than 1,700 known mutations of the disease.

The CFTR gene causes the CFTR protein to become dysfunctional. Without this protein, abnormally thick mucus will stick to the cell walls of various organs. This results in frequent life-threatening respiratory infections and continued hospitalizations. The disease attacks the lungs scarring them each time with different bacteria and the scarring is permanent. There have been 4 huge medical breakthroughs in the treatment of this disease in the last 5 years. The FDA approved CFTR modulators for most of the known mutations which has improved the quality of life for some.

Symptoms of CF 

People with CF can have a variety of symptoms, including:

 

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections including pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth or weight gain despite a good appetite
  • Frequent greasy, bulky stools or difficulty with bowel movements
  • Life Expectancy is in the mid to late 30’s

Please visit the Cystic Fibrosis Foundation page to learn more about the disease and different ways to get involved.

Contact Us

mike.runningwithdanny@gmail.com

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Resources

Save a life

Become an organ donor today!  Use the link below, if you are in the state of Florida.

Click Here

Become a COTA Patient!

If you have cystic fibrosis, you are eligible to offset ALL your out of pocket cost. Contact us or visit the link below for more information. 

Click Here

A Letter to Danny

November 4, 2000 – September 25, 2019

First, to all of you that have been sharing this journey with us, no matter the length of time. To those who celebrated Danny’s life with us. Your support, prayers, encouragement and Love for Danny are visible. We are blessed and we thank you.

We could write a 10 volume book series about you….

Daniel: You joined our young family at a very pivotal time in our lives. Little did we know then how much we would learn from you in such a short time. The first year of your life we had no idea why you were feeling sick. One morning watching The Today Show, Mari called me and told me she thought you had Cystic Fibrosis. They had explained every symptom you had on the show. We should have realized then how larger than life you are. The diagnosis came from National TV! When it was confirmed that you had CF, I remember thinking, ‘What Now?”. That thought was short lived. Every day we learned more about the disease and your care and every day we found ways to incorporate all of it into our daily lives, as a family, and continue pushing forward.

Growing up, through elementary and middle school, as a proud OLL Cheetah, we always had the unwavering support of friends and family to ensure that nothing stopped you from doing what you wanted to. Besides having countless hospital stays, you played T-Ball, joined the Scouts, played one season on a tackle football team, countless Disney trips eating Mickey bars, turkey legs, IV poles on wheelchairs and cutting in line, excelled in school and RAN Cross country. You grew up on the water with a fishing pole in your hand or in the woods, sitting patiently, waiting on a deer! Preparing for our Cub Scout camping trips was not an easy task. Besides all the tents, bikes, camping gear and food, we brought all your machines, and generators, to be able to power them. In the campground, when it was time to do your treatments, your scout mates, a bunch of first grade boys, would stop what they were doing and sit around you and wait for you to finish. To then pick right back up on the game of manhunt you were playing. You were the skinniest on your football team and your mom and I would cringe every time you got hit. At the end of practice, the team had to run laps and you thought it was a race. You would run in full pads as if you were in a 5K. You would be the first one back!! You have hunted and fished across the country, salmon in Alaska, Moose and bear in Idaho, Texas whitetail, big bass in Alabama, Deer and Turkey in SC, caught hammerheads in South Florida and swordfish in the keys. You touched the lives of many in your adventures and have people we now call Family and Friends. There was never a hunting or fishing trip you would miss, AND you RAN…..man could you run!!! You joined the cross-country team in 3rd grade and showed the world what you could do. Your competitive nature pushed you to always want to win. You would not settle for anything less. In fourth grade you went to your first corporate run in downtown Miami and took off, daring your mom and I to keep up with you. You finished that race in under 30 minutes. All on your own in that sea of runners. You ran 6-minute miles, ran 5k’s 10k’s and trained and ran in the Disney half marathon. I guess it was your way of giving CF the finger!!! You won’t stop me!!

Danny: You became an Explorer. From day one, you embraced the new chapter in your life and Columbus embraced you back. Determined to run cross country, you spent the summer before Freshman year in the hospital, on IVs. The rest of your team was practicing. You started your training one week before school started and competed by the second race of the season. The competition was different, and you already weren’t feeling your best. You were not in the lead pack anymore, but that just made you try harder. You finished every single race you ran in, even if you came in last. You always crossed the finish line. You never kept your disease hidden from anyone. You walked the halls of school without a care in the world of who might say something about the skinny kid that coughs. You showed them and they ALL loved you. You would complete the school year and the way you prepared for summer was packing a suitcase to check into the Joe DiMaggio Children’s Hospital resort!! New rounds of IV’s, treatments, tests…always having friends and family there by your side. Including visits form your dog, Gunner!! I can put together a timeline of you and friends, watching all of you grow up, changing into the men and women you are today, using only pictures from your hospital rooms. That is special.

You had an extremely rough Junior year and were not able to compete, much less travel with the team. Your daily regiment changed. You were now on IV’s full time. You missed quite a bit of school and had to complete your second semester online. A difficult decision, you wanted to be able to graduate an Explorer, you felt somewhat of a defeat, but you started it two months late and completed it a week early, proving once again, YOU CAN’T STOP ME!! . Knowing all this, Columbus kept Danny’s spot open and did everything to facilitate his return for Senior year. Senior year had to be one of the most special I have ever witnessed. You did not receive clearance to return to school until 3 days before the start of the semester. You arrived the first day back and walked those halls once again like you hadn’t missed a beat. Strolled into the open arms of all your brothers’ teachers and staff, leaving, once again, everyone in awe. At this point, we were already working on getting you on the transplant list and did not know what was to come.

Coach DQ: you coached your teammates loud and proud. Stood at the place where the rubber meets the road, with an IV pole in your left hand, a stopwatch in your right and screamed out the times and told them to kick it!!! Then it would take everything you had to muster up the strength to walk across the field for the awards ceremony. You would set up your chair behind your teammates, secure the IV pole to it and look at them proudly thinking, look what we’ve done. You made it to the State meet. You got the opportunity to travel, alone, with your team, for the first time. Packing 3 days’ worth of IV’s, medications, machines and gear, was a monumental task. Not to mention the fear your mom had wondering if you and the coaches could manage it all. Showing up on campus to load the bus, Danny’s stuff took up the first two rows alone. Once again, just put me in coach!!

When transplant became an apparent necessity, you still had a semester to go to finish senior year. During the evaluation process at the hospital, they asked you, is there anything in your life right now precluding you from being transplanted? The only thing you mentioned was wanting to graduate an Explorer. Feeling like you were, you worked hard, and Columbus presented you with the most beautiful and heartfelt graduation anyone has ever had. Thank you, Columbus !!!

Joanna, Michael, exceptional eight, tios, titis, tias, abuelos, abuelas, The dedication, love, care, worry, work, prayer, enjoyment and fulfillment that all of us experienced with Danny has no words. From day one to the next 6,899 days. No one faltered. There by his side whenever and wherever. From the countless hospital stays, to the races and ball games, to the Disney trips, fishing outings and hunting endeavors, to the countless last-minute flights we just endured. We experienced every facet of his beautiful life together. We were by his side till the end, as it should be, we are one and he will live among us forever. He adores you all.

Abuelo, Grandma, Tia Anna and Tio Miguel: Take care of our boy!!! He’s in your care now.

El Squad: What can we say about you, and those that have more recently joined that circle. You got to share a lifetime with your friend. And we’ve gotten to share it with you. The bond and the unconditional love you all have for each other is unmeasurable. A true example to all around you. I read a post about Danny recently that said, ‘He was the glue that held you together”. Well, he rubbed that glue all over each of you. That bond will never come apart. Although we will all miss him deeply, let’s not miss each other. You know where our counter is, and most of you already have claimed stools. You know where the pool is and where to get the best deer burgers in town. We love you..

Coach Pino: We could write several chapters in the book just about you. Sorry to single you out. I can honestly tell you that outside of family, you have been the man that most influenced Danny and that he looked up to. You were his main focal point at this school and through these last few years of his life. Thank you!!!! The look on Danny’s face when he came home from school and told us he is now “Coach DQ”, was one of ‘I’m back in the race!” and that insignificant phrase is all he ever wanted in life. Just put me in coach, I’ll prove I can do the rest. You gave him that chance.

OLL Class of 2015, Hellions and Class of 2019: Thank you for caring for Danny, thank you for loving DQ and sharing his wonderful journey. Take his Legacy of fight and determination and apply it to all you do in life. He would not expect any less of you!!!

Dr. Martinez and Cheryl: Danny was blessed to always have the best medical teams providing for his care, but Two people shone bright amongst all. Dr. Martinez and Cheryl. No words can be said for the compassion and fervent energy that both of you put into Danny’s care. Up until the very end, being able to reach you at a moment’s notice these last 30 days, as family, to help us in the difficult decisions we were facing, got us through it. We love you!!

Son, these last 30 days will not be the ones we dwell on but are oh so fresh and still need to be shared. You faced this like no other man could. We watched it 24 / 7. You showed hundreds of medical professionals what determination and perseverance are. They were all in shock. Countless caregivers that knew you for a few days came in on their day off just to say goodbye with tears in their eyes. The few of us that, this will sound strange, got the privilege of watching you endure what you did was the biggest life lesson you left behind. The last thing you mouthed to your doctor was, ‘Am I still listed”? he looked at you in the eyes and said YES. You nodded, cracked that signature Danny smirk, closed your eyes and took a deep breath over the ventilator. I read your mind, KEEP ME IN COACH, I’M STILL IN THE RACE. And that is how you crossed the finish line, still racing.

Danny, your spirit will continue to live on, in so many of us. Some that knew you and many others that knew of you. The mark you left on this Earth in your short 18 years is indelible. You taught us all what persistence, perseverance, determination and passion are. Your smile lit up a room. You were a son, brother, friend, nephew, grandson, and teammate that left zero doubt of the man you became. An example to all. Daniel, Danny, Coach DQ, we love you, your pups and us will miss you deeply….Rest peaceful son, We hope you enjoy your running, hunting and fishing in Heaven. You are draped in God’s mercy now. You’ve made it to the finish line. It’s your turn to start yelling at us to kick it and run like you taught us. See you there!!!

Remember, O most gracious Virgen Mary,

That never was it known

That anyone who fled to thy protection,

Implored thy help,

Or sought thy intersection, was left unaided.

Inspired by the confidence,

I fly unto thee, O Virgen of Virgins,

My Mother.

To thee I come, before thee I stand,

Sinful and sorrowful,

O Mother of the Word Incarnate,

Despise not my petitions

But in thy mercy hear and answer me, Amen

St. Marcellin Champagnat. Pray for us.

Mary our good Mother…pray for us,

And let’s remember…to pray for each other

Hellion, Explorer, Example of Christ!!

ADELANTE!!!!