Long Road, Big Hope: Mikko’s Journey to CHOP

Hi friends, family, and kind supporters—

We’re preparing for another journey to the EB Clinic at Children’s Hospital of Philadelphia (CHOP) for our son, Mikko, and we’re asking for your help.

Mikko has Epidermolysis Bullosa (EB), a rare genetic condition that causes extremely fragile skin and requires constant, intensive care. This upcoming trip includes critical GI testing, dental evaluations, and a surgical consult to explore a possible g-tube (feeding tube) and dental work needed. While we’re doing everything we can to avoid major surgery, we also know we need answers—Mikko has been eating less, getting full quickly, and not growing at the pace we hope for. We’re hoping this visit gives us much-needed insight.

We’re grateful that Mikko’s appointments will be covered by our current insurance, which runs through the end of July. However, due to my job ending and switching school districts, we’ll have a gap in coverage shortly after this trip. Because of that, we’re unable to pursue any major procedures right now—like the g-tube—which would require long-term follow-up and additional care during the insurance gap. That makes this upcoming trip all the more important, as Mikko will be seeing multiple specialists knowledgeable in EB and undergoing testing to help guide his care moving forward. His medical team here in Florida relies on the expertise and recommendations of his specialists at CHOP, making these visits essential to ensuring he gets the best support possible year-round.

Because of Mikko’s medical complexity, flying is not possible. We’ll be driving from Southwest Florida to Philadelphia with Grandma, Grandpa, Big Brother, Mikko, and me—his mom. We’ll be taking Mikko’s wheelchair, as he tires easily and needs support for longer distances. He is also on a highly customized, blenderized diet that takes multiple days to prepare. All of his meals must be frozen and transported with us, along with the medical supplies and equipment needed to support his daily care and weekly gene therapy.

Mikko’s care is incredibly hands-on. His bandage changes alone require multiple adults and take a significant portion of the day. Grandma and Grandpa are both trained medical professionals and are the only ones who can administer his weekly Vyjuvek gene therapy. Their presence on this trip is essential to keep Mikko safe and well.

We’ve applied to stay at the Ronald McDonald House near CHOP, but due to high demand, we won’t know if a room is available until the day we arrive. Because the drive from Florida is long and tiring for Mikko, we’ll be making the trip over several days and will also need a place to stay during the week of appointments in Philadelphia.

We’re asking for help raising $3,000 to cover:

This year has brought a lot of transitions—medical, emotional, and financial—but we’re doing everything we can to stay strong for Mikko and make sure he receives the care he needs.

Every donation, share, or kind word helps us get there. Thank you for being part of Mikko’s journey and standing with our family during this critical time.

With love and gratitude,

The Calderon Family