It all started about week after Lane was born. He started getting blisters around his mouth and as he got older, they progressed to different parts of his body. The doctors weren’t sure what it was. They tested him for different things and everything would come back negative. When Lane was four months old, he was placed in the hospital for RSV. While in there, they took blood and did blood cultures and couldn’t find anything. They then told us about EB.
I had never heard of Epidermolysis Bullosa before. They got us into Riley Hospital as soon as thy could and all the doctors agreed and thought it was EB. They took a biopsy and it came back inconclusive. We were told if it’s a mild case it will most likely come back inconclusive every time and that the only way to get a definite diagnosis was a genetic blood test.
Our insurance denied the test so I created two online fundraisers to try to raise the money. We just needed to reach a goal of $3,000 and we got there pretty fast. As people continue to donate, we are using the additional money for different medical needs and anything else he may need like special diapers, special shoes and anything else that butterfly children require due to their fragile skin.
Lane used to get most of his blisters on his neck, hands, feet and mouth. Now, with the weather starting to heat up, he gets the blisters everywhere. Mild case or not, it’s stressful and very hard. A lot of people never understood what I went through on a day to day basis until they saw pictures. Lane is a trooper though. He smiles through the pain and almost has a smile on his face.
In addition to the Donate Button below, you can also donate to Lane through GoFundMe here.