We have 1 week to raise money and prepare for getting Mikko from Florida to Philly! We just got confirmation on Thursday (7/11) that EB Clinic is a GO and that our first appointment is 7/22! Financially we are in no position to make this journey, but it needs to happen. Mikko has a very worrysome darker pigmentation on his face that his doctors are concerned about. He has about 16 blood markers that are out of wack, his iron is very low. These past few months he has actually lost weight (most kids with his severity of EB have G-tubes). He needs to be seen by doctors who are trained and experienced in EB, in order to do a comprehensive assessment and to create a care plan going forward. The closest EB clinic is a 17 hour drive away (and that's before you include the fact that you are traveling with a medically fragile 2 year old! Whom requires a lot of supplies and care) Glenn has been working long days, 6 days week this summer to try and help us catch up on bills and keep our house. After Mikko was born he had to quite the job he loves to stay home and care for Mikko during the day. Since my teaching job has our benefits, during the school year I work and then come home to take care of Mikko's bandages, which involves 4+ hour bandage changes most nights. During the summer I stay home with the boys and Glenn works like crazy. Mikko was born with Recessive Dystrophic Epidermalysis Bullosa, an extremely rare and painful genetic disorder. He spent his 1st 6 weeks in the NICU at All Children's in St. Pete. (They typically get 1 EB baby a year, that's how rare it is.) Most doctors and nurses have never even heard of EB, so this makes treating it very difficult! We have a great care team here, but it's time we connect with the specialist, to help guide our care team back home. Right now there is NO cure for EB, just trying to manage the wounds and prevent infections. Mikko's bandages cost about $10,000/Month! Thankfully my insurance covers a lot (but not everything). We used to have Medicaid as a secondary to help with some additional supplies, costs and services. But we found out in April that they discontinued that program. (Trust me we aren't going out without a fight, but we've currently hit a road block). We would greatly appreciate an help or support we can get to help get Mikko to EB clinic! It truly does take a village.❤️🦋❤️
We just found out that we are approved for Mikko to go to EB clinic up at Children's Hospital of Philadelphia (CHOP)! Mikko has a dark pigmentation spot on his cheek that is very concerning to his physicians. Mikko has never been seen by a physician that is experienced and trained in EB. This will make a huge difference in Mikko's plan of care!
Now the scary part... Trying to afford the trip on such short notice! Glenn will have to stay back and work, so my parents will be accompanying us to help with bandages, caring for Mikko, and being an additional set of ears to help me remember everything we learn.
As of right now we are planning on driving up. We will have a FULL week of appointments (7/22-7/26). We will need to be up there Sunday and will likely depart the following Saturday.