Jennifer Bair Cysensky is organizing this fundraiser.
Firstly, thank you so much for visiting our funding page and considering donating to our little boy. Jacob was born in 2010 with a rare medical condition called Epidermolysis Bullosa. He was born missing skin on his right leg and foot and started blistering on his hands and feet from friction. While we are EXTREMELY blessed that his form is considered mild in the world of EB, he still lives in bandages because even the slightest fall can remove all the skin on his knee, shin, or foot and cause painful blisters. We are now seeing the other effects of his EB in his teeth being compromised and dealing with rapid decay, leaving him in a LOT of pain. He also is developing thickening dry skin around his toes causing painful cracking and pealing. These amazing children deal with more pain than any child should with this horrible condition with no cure. We are VERY blessed to have decent insurance that covers a good amount of our expenses, but with myself (Mom) not being able to work due to my own medical complications, including 5 knee surgeries, our medical costs are drowning us. As hard as it is, we have now come to the point of needing to reach out for help. We do not have guarantees that Jacob's dental surgery that he had yesterday, including 8 fillings, 2 partial root canals, and 5 caps, all under full anesthesia, will even be covered by insurance. Which could possibly leave us with a $14,000 bill. Even if insurance will cover it, we will still have to cover $3,500. We are also still paying on hospital bills from Jacobs fall last year in the amount of $2,500 and the remaining balance on my 5th surgery of $1,000. With all of these costs, we are struggling to pay for the high cost of the bandaging required to help protect his skin as much as possible and are almost out of what we had saved up, requiring us to add more to our medical debt. This is a really hard thing to make public and to recognize that we can no longer do this on our own. Rather than just asking for funds, I am making butterfly bracelets to gift back for a minimum $20 donation. For those not familiar with this condition, the butterfly is a symbol for Epidermolysis Bullosa because their skin is fragile like butterfly wings. Thank you again for your time in reading this and considering "purchasing" a bracelet. Obviously $20 is not required if you would just like to donate to our little boy, each and every dollar is such a help and we are so thankful for it! We are so blessed to be surrounded by friends and family that have been so willing to help! We are forever grateful to you! - Jennifer (Jacob's Mom)