Rachel

Name: Rachel Barber

Location: Delaware, Ohio, USA

Form of EB: Recessive Dystrophic

Birthdate: September 22, 1998

Lives With: Mom Molly, Dad Greg and 2 Cocker Spaniels named Maggie and Heidi. A new baby brother is coming soon :-)

More About Rachel:

Rachel is a very happy, outgoing little girl.  She has gone through a lot during her first 18 months of life, but she hasn't let her EB get in the way.  Rachel is a HUGE Teletubbies fan.  The Teletubbies have pretty much been our savior during baths, bandage changes, and meal time.  Rachel knows all of their names and sings joyously along with them.  We have all seven of the Teletubbies tapes and they are constantly being played in the VCR.  Rachel even dressed up as Po for Halloween.  Everyone in our neighborhood thought she was adorable, although someone did mistake her for the devil. 
 
Another favorite past-time of Rachel's is playing with our dogs Maggie (or Baggy as Rachel pronounces it) and Heidi.  She loves to chase them around the house yelling their names and poking her fingers in their eyes and noses.  The dogs really don't appreciate this though.  Rachel also knows to call Heidi "BAD" when she walks by the puzzle piece that Heidi chewed up.  But Rachel always seems to be able to put Heidi in her place by chasing after her with a child size broom, that Heidi is thoroughly terrified of. 
 
Rachel recently had a wonderful time in Florida at Disney World.  She got to see Mickey Mouse and Cinderella's Castle and she even got to ride the Merry-go-round with her dad.  Rachel also met and played with a lot of other kids who also have EB.  It was a fun time for all. 
 
Rachel is usually a pretty good sport about all that she has to go through.  So far she loves to take a bath and as long as Teletubbies are on she doesn't mind the whole bandaging ordeal.  The main problem that Rachel has is swallowing.  She has only had to have one surgery so far and that was an esophageal dilatation.  Rachel's diet consists of very soft, mushy foods.  She absolutely loves yogurt (which is "Pudding" to Rachel).  She also eats applesauce, ice cream, cheese puffs and of course 3 cans of Pediasure.    Even though Rachel's diet is restricted she continues to gain weight very well, as she weighs 25lbs. now.
 
Rachel also will have a baby brother coming in September.   I have been trying to tell Rachel that there is a baby inside of mommy's tummy, but I don't quite think she understands.  When she lifts up my shirt she says "Baby", but I don't think she actually understands that there is a real baby in there.  It will only be another 4 months before she can actually meet her new brother, his name might be Matthew Alan (who knows?).
 
Rachel is the best thing that has ever happened to us, EB or not.  Both her mommy and daddy love her dearly. 

Send e-mail to Rachel's Mommy