Kordylias Kure

On September 15 we got the worst possible news EVER! Kordylia was given the possible diagnosis of Fibrodysplasia Ossificans Progressiva (FOP). FOP is a disease where muscle and connective tissue such as ligaments and tendons are gradually replaced by bone. There is no treatment or cure for this disease because of its rarity but in order to know for sure whether or not she has it we have to go to PA to see Dr. Kaplan, the only specialist in FOP and the genetic testing for it.

Dr Maciel at the Shriners Hospital is Tampa said that if it's not FOP then it is Brachydactyly and she will need surgery to correct the valgus deformity in her feet.

Either way Kordylia will have therapy, casts, and/or numerous test which in return means lots of flights to PA/trips to Tampa, hotel stays, and a lot of missed work. We want the best for our little girl regardless of the diagnosis and we need help financially in order to make that happen.

We are not necessarily asking just for money. Donated sky miles and hotel point would be a huge help as well. All funds raised will go into a savings account for Kordylia and used as needed for items that pertain to either disorder/disease being this could potentially be a life long journey for all of us.

#PrayersForKordylia