KicKee Pants' EB Awareness Donation Campaign // Blake Kenyon
Our beautiful son Blake was born on March 7, 2011. After 24 hours, blisters began appearing on various parts of his body. After a week in the NICU and speaking with our pediatricians, we were pretty sure he had Epidermolysis Bullosa. A biopsy confirmed that he had EB Simplex-Severe Generalized. The first couple years were very difficult in terms of learning what would work best for Blake, establishing a routine for wound care, and coping with the emotions that having to put your child through daily pain evokes. We also dealt with (and continue to deal with) a lot of feeding issues as a result of EB.
One of the difficulties for many with EB is finding clothing that does not cause damage to the skin and keeps them cooler. KicKee Pants have been a staple in Blake's wardrobe ever since we learned of them. He often wears them inside out so that the seams do not rub his skin. They are super soft and breathable. He also sleeps with a KicKee Pants blanket at night as traditional blankets are too warm for him. We are very thankful to the KicKee Pants company for supporting EB awareness and organizations like The Butterfly Fund.
Blake continues to blister daily on various parts of his body. We perform two wound care sessions daily. One in the morning and one in the evening which includes his bath. We try to keep him as distracted as possible with dvds, jokes, songs, etc. Despite his wounds and blisters, Blake loves playing spy with his preschool friends, jumping in a bounce house, playing ball in the yard, and following his older sister around. He also enjoys typical preschool-age boy things like trains, Teenage Mutant Ninja Turtles, and Batman. His determination and strength are amazing. We know different ages will present different challenges and that there will be peaks and valleys on this journey. But we know that we will get through this as a family and with the support of family, friends, and other members of the EB Community. We will also continue to strive for a cure by spreading more awareness about Epidermolysis Bullosa and raising money for vital and exciting research that is currently being conducted.
Click the photo above to see our intro post on EB Awareness Week and to learn more about Epidermolysis Bullosa and The Butterfly Fund.