Journey to Mighty Myles’ 3rd birthday, in light of his rare health problems
LE CENTER, Minn. (KEYC) — A Le Center boy was diagnosed at birth with a rare disorder that affects his heart, skin, face and hair.
“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 fight with him and we are fighting for him,” mother of ‘Mighty Myles’ Ashley Genelin said.
Myles Genelin is approaching age three and has already lived up to his nickname, ‘Mighty Myles.’
Myles’ health journey began when he was diagnosed with a disease that affects one-in-a-million people: cardiofaciocutaneous syndrome, along with a list of other diagnoses and medical conditions.
“We don’t really know how much time we have left with Myles. Pretty much, we have the life of his central lines, how ever 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,” Genelin said.
For the Genelin family, memories will be made by checking off boxes on a bucket list.
Last month, Myles’ health decline resulted in the decision to put him on hospice care, making that bucket list that much more meaningful.
It’s a list of 50 experiences that Myles’ mom says every kid should have.
One big one will be completed when he turns three.
“We’re going to throw an epic birthday party for him this weekend,” Genelin said.
It doesn’t stop there, the Genelin family will continue a three year tradition of giving back to the Ronald McDonald House, where they have lived for well over a year while Myles has battled in the hospital.
More than 260 blankets and other donations will be given to the house for families in a difficult time.
To follow Myles’ journey visit: https://www.facebook.com/mightmylescfc/.
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