Myles Oslo Ramirez

Myles is the kind of little boy who changes a room the moment he’s in it. His smile is contagious, his laugh is unforgettable, and his joy – despite everything he faces – is nothing short of inspiring.

But Myles’ journey hasn’t been easy.

He was born with a rare genetic condition called Acampomelic Campomelic Dysplasia, which has required extensive medical care since the very beginning of his life. In fact, Myles spent the first seven months of his life at Children’s Hospital of Philadelphia, fighting battles most of us can’t even imagine. And he’s still fighting… every single day.

Our Focus Has Shifted: Preparing a Home for Myles

We have an incredible update to share: we found an amazing deal on a van that will work for Myles and made the decision to finance it ourselves! Having reliable transportation that can accommodate Myles, his equipment, and everything that comes along with traveling with a medically complex child was one of the biggest pieces of bringing him home. We are incredibly grateful to finally have that piece in place.

Now, our focus has shifted to the next—and possibly biggest—step: actually bringing Myles home.

As we have gotten further into parent training and discharge preparation, we have started to understand just how much space caring for Myles at home will require. We currently live in a small two-bedroom, one-bathroom home. We had hoped we could make the space work, but the closer we get to his transition home, the more we realize that it simply isn’t practical for his level of care.

Myles won’t be coming home with just a crib and a few supplies. He will have medical equipment, respiratory supplies, medications, feeding equipment, emergency supplies, and everything needed to safely care for him. We will also have home-care nurses coming in and out of our home every day. He needs a space where his equipment can remain organized and accessible, where his nurses can safely provide care, and—most importantly—where Myles can finally have a space of his own after spending so much of his life in hospitals and medical facilities.

Because the van is now taken care of, we have lowered our fundraising goal significantly to $15,000 and are shifting the funds we have raised toward preparing an appropriate living environment for Myles. Our hope is to find a three-bedroom rental closer to CHOP, with the additional bedroom providing the space necessary for his care, equipment, and nursing needs. Funds raised will help with the expenses associated with establishing and maintaining the living environment Myles needs as he transitions home.

Moving closer to CHOP has also become increasingly important. Our family will be transitioning to one vehicle, and it is looking increasingly likely that one of us will need to remain home with Myles full-time because of his level of care. Being closer to his medical team and hospital would give our family an added layer of security should an emergency arise.

For so long, our goal was simply getting Myles home. Now we’re close enough that we’re learning what “home” truly needs to look like for him.

Every donation, share, prayer, and word of encouragement has helped us get to this point. We aren’t trying to build something extravagant—we’re trying to create enough space to safely bring our little boy home and give him the care he deserves.

Thank you for continuing to walk beside our family as we work toward the moment we’ve waited so long for: Myles finally coming home. 💙🌙