Help Mikko get the care he needs at CHOP (2023)

Story

6-year-old Mikko lives with an extremely rare and painful genetic disease called Epidermolysis Bullosa (EB). This disease causes his skin to blister and sheer off at the slightest touch. As a result of his disease, Mikko requires most of his body to be wrapped in specialized bandages to protect his skin. EB is more than skin deep; it comes with a whole host of other complex medical issues which require EB knowledgeable experts to manage his care. Mikko and his support team (his family) are gearing up to make the 1200-mile drive from Florida to the Children’s Hospital of Philadelphia (CHOP) to see his specialized EB team this July and need your help to make this happen. This is a trip Mikko must make each year, to receive the specialized care that he needs. The closest EB clinic for the family is the one at CHOP. Mikko will spend about 5 days as an outpatient at CHOP having numerous tests done and seeing a plethora of specialists. These specialists play a key role in advising his local All Childrens Hospital team on how best to meet his needs. Due to how this disease affects his body, Mikko is unable to eat traditional solid foods and relies on a specialized, nutrient dense, blended diet that must be prepared in advance and kept frozen. In addition to needing to pack frozen food for the entire week he will be at CHOP, we also must pack a large amount of bandaging materials, medications, and other medical supplies needed for Mikko’s care. Mikko’s bandage changes take 6 to 8 hours to complete, are very painful, and require multiple adults helping. Trying to unbandage and quickly rebandage areas while talking to a doctor is even more challenging. For these specific reasons, the family will be driving up to CHOP. This year Mom, Grandma, Grandpa & big brother (Mikko’s best friend and emotional support) will be making the trip with Mikkos to help support him. We are asking for help covering the cost of this essential trip including medical expenses, food, lodging, gas, tolls, and basic expenses along the way. (We have applied to stay at the Ronald McDonald House in New Jersey, which would be a huge help, but will not have confirmation of a room until after we are on the road.) Caring for Mikko has taken a great financial toll on our family. We do not have the means to cover the costs of this trip, mom is a teacher, and her salary is the family’s main source of income. Dad sacrificed his job to be home and care for Mikko. Any support would be hugely appreciated, regardless of how big or how small. Please help Mikko get the care he needs, by making this trip possible. We truly are grateful for all the support we receive. You can learn more about Mikko and follow his journey on his facebook page: Mikko the Mako. We will also post trip specific updates to this GoFundMe.