Butterfly Children
Welcome!
On this page you will get to meet some of these amazing EB children. Let me introduce you...
Click on photos to view them larger.
Wesley Stone
Birthdate: July 31st, 2003
Form of EB: Unknown, but most likely JEB-H
Location: Savannah, GA
Parents: Chris and Heather Stone
About Wesley:
Wesley is the happiest child and a great joy. He has a trach, g-tube and port catheter.
Wesley Hiding in the Tent
Wesley's 2nd Birthday
Dillon Evans
Birthdate: December, 2002
Form of EB: DEB
Location: Mississippi
Parents: Frank and Shannon Evans
About Dillon:
I was born in Dec. 2002, I was missing some skin on my left foot and ankle. The doctors thought at first it was a cord accident and all would be fine. Needless to say it wasn't all fine. Blisters began to show up, then my parents began their search to find out what was going on and if I would be alright. About 5 months of age they found out I had EB. We had never heard of this before and didn't know what to expect, so our journey began. My parents do their best to take it a day at a time, the best way they can. I am 150% all BOY to say the least! I don't let much slow me down if I can. I keep everyone on their toes! hehe
Dillon taming the Komodo Dragon! - 8/2005
My Mom and Dad - Frank & Shannon - 8/2005
Me and my Mom riding the carousel - 8/2005
Goals & Talents: Well with my little guy only being 2.5 yrs old at the moment its hard to say. But his love for building things and helping dad build things I'd say if he can he too will love to build furinture and such things as this. He Loves tools!
Likes & Dislikes: His likes are tools, wood, animals, cars/trucks, motorcyles and blocks. His dislikes are like your typical toddler, he doesn't care to hear NO too much! lol Or not feel in totally control with some things.
Katherine
Birthdate: 2000
Form of EB: RDEB
Location: Texas
Parents: Draha and Milan
About Katherine:
Katherine was born perfect but showed signs of the EB at the 5 weeks of age. We were lucky that she was diagnosed very promptly and we started our "journey/life" with EB fairly well educated by the specialists. The contact with the other EB parents/caregivers/sufferers through the Internet or personal contacts proved to be the best thing in the managing of Katherine's disorder. We strongly believe that without the knowledge how to care for her shared by other EB sufferers/caregives Katherine's life would be very much different and we thank all in the EB community for that.
Goals & Talents: She wants to be a princess when she grows up :-)
Likes & Dislikes: Katherine loves to sing, dance, whirl, twirl, hop, run, jump, swim, dive, climb, and generally do all the activities the other children enjoy at this age. Mom and dad are graying at the increased speed because of that but also are very happy that she is able to do all these things.
Samantha
Samantha age 2 1/2
Birthdate: August 29th, 2002
Form of EB: EBS-DM
Location: Orlando, Florida
Parents: Joe and Sara
About Samantha:
Sami was born 6 weeks early and her EB was very obvious at birth.. missing skin on her knees and feet. The first year was the toughest, but things eventually got easier and as she got older, her skin improved ALOT! In addtion to EB, she also has Scoliosis, in which she had to have surgery on this past May. Other than that, she is a typical 3 year old!
Goals & Talents: She was to go to the moon someday!
Likes & Dislikes: Likes: to swim, read, watch her 'toons', make messes and play at the park.
Dislikes: cleaning up her toys, going to bed and brushing her teeth!
Samantha's 3rd Birthday
