Hi-I’m Tammy and my husband of 12 years is Gary. We have four kids, two of which are affected by
“Epidermolysis Bullosa” otherwise known as “EB”. Our kids names are Joey 2/2/89, Breeana 9/12/91, Christopher 4/3/93 and Jeffrey
2/2/2000… yes Joey and Jeffrey were born on the same birthday! Christopher and Jeffrey have “EB” the Junctional Non Herlitz type. Joey and Breeana do not have “EB”.
Christopher and Jeffrey are very active and live relatively normal lives despite their “EB”. Christopher’s birth was very traumatic. We were prepared for Jeffrey’s so it wasn’t as traumatic. He was born in Albuquerque where Christopher was airlifted to when he was born.
Christopher loves going to the races at our local track, hunting, collecting knives and his all time favorite; driving the four-wheeler. Christopher has driven a stock car for practice but has not yet driven an actual race, although he wants to! He is kept happy for the moment with the four-wheeler …whew! Gary and I are really nervous about him racing someday. He also goes hunting with his Uncle Bobby and cousin Brian. They hunt for birds, call for coyotes and also target practice. (Uncle Bobby is a certified Firearms Trainer) Christopher has a pretty neat collection of pocketknives and different types of knives. His cousin Jimmy is a truck driver and brings him all kinds of knives from many different states. Of course Jimmy is also into collecting them. In the summertime when it is hot Christopher likes to swim. He can swim either at my parents’ house or at ours. Swimming feels really good and refreshing to his skin. The chlorine actually cleanses his “owies” and he can have lots of fun while keeping cool at the same time!
Jeffrey loves to play with his cousin Nicolas and his friend Delaney. He loves to play with “big trucks” a-k-a 18-wheelers and has tons of them!! He also loves trains and all kinds of tracks. He has a huge collection of these. It’s normal for our house to have a train track going through the kitchen, living room and around the counter and also a truck stop built along with a racetrack and cars parked all over. Walking around with out messing it up is crazy! Jeffrey likes me to leave it all out and not pick it up so he can play with them day after day. I usually do until I can’t stand it anymore only for him to rebuild it all again. At night Jeffrey stays up extremely late, often till 2a.m. playing with all his trains, cars and trucks! He is a night owl!
I home school both Jeffrey (kindergarten), and Christopher (6th grade). They both do very well. Christopher went to a public school till 5th grade. I’m glad they are at home. It takes away a lot of worrying and stress. My other two Joey (10th grade) and Breeana (8th grade) keep me worrying enough! Ha Ha. Middle school and High School are stressful times.
Gary and I have a great relationship and both do bandage changes and bathes. We alternate doing it so just one of us isn’t always stressed out or frustrated with it. I only wish the boys could have days off from EB!
We are also lucky and blessed with a supportive family to help out with all the kids. Both my mom and my sister in law have experienced traumatic times with the
boys… Auntie Rain is very good at distracting from the pain while in the emergency room! They both can do bathes and a full bandage change on their own.
Joey and Breeana are very helpful with the boys. They are great at bandage time when we realize that we forgot to get all our supplies and they run to get them. They also can take care of them and bandage owies if they happen while they are watching them for me. I can leave them alone with either of them to run an errand or just take a break. This is a HUGE help!
It’s hard to give Joey and Breeana the same amount of attention due to the fact that the “EB” demands so much more. Both of them deal very well with that and are understanding and helpful at the same time.
We consider ourselves very fortunate that Jeffrey and Christopher are able to do so much in their lives. We realize that their EB could be much more severe and involved. We have a supportive family and wonderful friends that we are very grateful for!!
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