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 since he was given a 10% chance of surviving past the age one 1. He has spent much of his life in hospitals and transitional care, fighting battles no little boy should have to face.

Now, we’re preparing for the moment we’ve waited so long for: bringing Myles home.

We Found a Van! Now We Need Help Making It Ready for Myles

We have an incredible update to share: we found an amazing deal on a van that will work for our family and made the decision to finance the purchase ourselves! This is a huge step toward having transportation that can accommodate Myles and everything that comes with caring for him.

However, purchasing the van is only part of the process. It still needs the conversion necessary to safely accommodate Myles and his equipment, and that is a cost we cannot afford on our own.

The funds raised through Myles’ Help Hope Live campaign will go toward converting our new van for his medical needs. We are taking on the vehicle payments ourselves, and your support will help us complete the modifications he needs for safe transportation.

We have lowered our fundraising goal to $15,000. Every donation and share brings us closer to having the van ready for appointments, trips home, and eventually the everyday outings we’ve waited so long to experience together.

Preparing a Home for Myles

Alongside the van conversion, we are working through another major part of bringing Myles home: finding an appropriate living space.

We currently live in a small two-bedroom, one-bathroom home. We hoped we could make it work, but as we learn more about his care and discharge needs, we’re realizing how much room his equipment, supplies, and daily nursing care will require.

Myles won’t be coming home with just a bed and a few belongings. He will need respiratory supplies, feeding equipment, medications, emergency supplies, and space where everything can remain organized and accessible. Home-care nurses will also need room to safely care for him.

Our hope is to find a three-bedroom rental closer to Children’s Hospital of Philadelphia. With our family transitioning to one vehicle and the possibility that one of us will need to stay home with Myles full-time, being closer to his medical team has become increasingly important.

For so long, our goal was simply getting Myles home. Now we’re close enough to understand what making that possible will take.

Every donation, share, prayer, and word of encouragement has helped us get here. Your support through Help Hope Live will help us finish the van conversion… one essential piece of bringing our little boy home safely.

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. 💙🌙