Myles Was Here To Teach Us
Losing a child is heartbreaking. Ashley Genelin lost her son Myles when he was just 3 years old. He was diagnosed with cardiofasciocutaneous syndrome or CFC. They did their best to keep him at home as long as possible, even when caring for Myles was like running an ICU. Make-A-Wish allowed them to take this mini-ICU on the road so that Myles could enjoy being with their extended family and the great outdoors. The memories built in this medical camper still serve to connect the rest of the family with Myles.
Ashley has leaned into all of this and now serves CFC community full-time. She was a member of the Board of CFC International and now is on staff. She hopes that sharing her story will make this easier for other families and will lead to changes in how the world manages rare syndromes like CFC.
Learn More:
https://www.mightymylessuperheronetwork.com/ The Mighty Myles Superhero Network was founded with the mission of providing support to entire families of chronically ill children and families experiencing child loss. We believe that grief is a complex and lifelong journey that requires support and compassion. We strive to raise awareness for loved ones supporting others in their grief, and for the awareness of the needs of those caring for medically complex children.
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