Name: Tammy Bradley
Location: New Mexico,
Children with EB:
Christopher & Jeffrey JEB.
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
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 whilekeeping 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
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.
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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