3-year-old “Mighty Myles” dies after long battle with rare medical condition

People often say that the world is an ‘unfair’ place – and I couldn’t agree more when reading about very young children suffering from incurable diseases.

It’s terribly tragic when innocent, young kids are forced to undergo difficult treatments and surgeries – just to even have a chance to survive their first years of life.

Today was a very hard day. Myles is in an absolutely miserable amount of pain. He’s had a great team of nurses and…

Gepostet von Mighty Myles & His Journey With CFC am Mittwoch, 22. Januar 2020

Three-year-old Myles Genelin from Le Center in Minnesota was one of these children, having to go through things no child should ever have to – but his fight against a rare disorder inspired thousands.

Unfortunately, his family now has a tragic message.

On Wednesday, his mom announced on Facebook that Myles had passed away and checked off another one of his trademark bucket list items, to “Be Free Of All Tubes, Cords and Lines.”

⭐️BRAG POST⭐️11/6/19: Myles rolls over in a COMPLETE roll… back, to stomach, and all the way through onto his back…

Gepostet von Mighty Myles & His Journey With CFC am Mittwoch, 6. November 2019

When Myles was born, in March 2017, the doctors realized that something was wrong. He was soon diagnosed with a disease affecting one-in-a-million people: Cardiofaciocutaneous syndrome.

Cardiofaciocutaneous, or CFC syndrome, is a disorder that affects many parts of the body, especially the heart, face, skin, and hair.

Myles has been a busy guy these past few weeks! We have OFFICIALLY been home more than a MONTH and have been getting out…

Gepostet von Mighty Myles & His Journey With CFC am Sonntag, 21. Juli 2019

For people suffering from the disorder, life expectancy is often shortened, due to the early deaths of those with severe cardiac involvement.

Of course, parents Michael and Ashley Genelin were devastated when they got the doctors’ verdict.

“We really don’t know how much time we have left with Myles. Pretty much, we have the life of his central lines, how long they last. Our track record with him is not good, so we’re really, really hopeful that they’ll last a long time and we’ll have a lot of time to make memories with him, ”the mother of ‘Mighty Myles’, Ashley Genelin, told KEYC in March.

But, as his nickname tells you, ‘Mighty Myles’ was a real fighter. He took on all the challenges that were placed before him – always with a smile.

Together with his family he managed to survive, day by day.

“His quality of life is the number one priority and that he feels loved and that he knows that we love him and that we are here for him and that we are fighting with him and we are fighting for him,” Ashley Genelin said.

Unfortunately, Myle’s condition deteriorated in early 2020 and it became increasingly urgent to tick things off his bucket list.

Among other things, the family organized an epic birthday party when Myles turned 3 years old.

But Wednesday proved to be the day that Myle’s family and friends had feared. In an update on Myle’s Facebook page, Ashley announced that their little fighter had passed on.

The Facebook post reads: “Mighty Myles will forever sport a set of beautiful angel wings behind his superhero cape. We are broken. Our hearts are shattered and aching with excruciating pain. But Myles is forever healed.”

The little boy will be mourned by many. His life was unfortunately short, but Myles exceeded every limit set on him despite the physical challenges he faced.

“His family will miss his middle-of-the-night play parties, his sweet voice, reaching out to touch their faces, the cute tuft of curls on top of his head and every other perfect part of him,” his obituary states.

Bucket List Item #50: Be Free Of All Tubes, Cords and Lines ✅Mighty Myles will forever sport a set of beautiful angel…

Gepostet von Mighty Myles & His Journey With CFC am Mittwoch, 6. Mai 2020

Even though Myles fought for his life for 1,149 days, his contagious smile remained a trademark and a reminder to us all to take time to stop and enjoy every possible moment.

Mighty Myles was a real-life superhero that touched the hearts and lives of many in just three short years.

Feel free to share this article in honor of his memory – and please send your prayers to the family.