Welcome to My Personal Page
Thank you for supporting me in my efforts to raise money and awareness for the EB community, and debra of America. Please click the button on the right of the page to complete your donation. Every little bit helps us get closer to a cure for The Worse Disease You've Never Heard Of. Did you know that of those born with EB in 2014, 22% are no longer with us? That's why we count on the support of people just like you: Because the cost of doing nothing is too great.
Our Son, Landon. was born on October 19, 2017 and quickly after birth we discovered skin peeled away on the top of his hand. This alarmed the hospital staff and they began to assess him to see what was wrong. Soon after other trama areas began to present themselves. He was then transfred to Toledo Children's NICU for further evaluation. Within about an hour or so of being their we were told he needs to go to Mott's Childrens NICU as they believe he had what was called Epirdermlysis Bullosa (EB). So in about 10 hours time we went from having our 2nd child (together, we have a third that is my wife's) to our world completely flipped upside down.
We spent the next 3 weeks at Mott's Childrens learnign about EB and how to care for our son. Which at times was so overwhelming we did not know if we could do it. We kept letting all the wrose case senerios creep into our head. We would get overwhelmed with everything go for a walk to clear our heads and process things. The staff at Mott's was nothign short of amazing with us and our son.
Well we got him home and begun to learn our new normal of wound care and lancing blisters all the while trying to provide as a normal of a life for our other boys. Needless to say it has been exhausting the past 5 months. What gets us through it is out son's very infectious smile and laugh. We just smiles through it and does not let EB slow him down.
We know one day we will have to make tough choices for our son that will affect his quality of life. We hope that research continues to maeke strides so those decsions do not need to be made or are as hard to make. This is why I am running for #teamdEBra and raising money in hopes that a cure is discovered in the coming years.
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