From Toby's Mom


Since November 2003, EE, as it is commonly known in our
house, has consumed our hearts and lives.  At the tender age
of three, what started out to be a typical childhood malady of
fever, pain, heartburn and stomach problems, was soon
diagnosed as EE and included EC. Eventually Toby quit eating
and drinking due to the extreme discomfort. Doctors performed
seven scopes on Toby to determine the extent of this
ever-growing disease. With each procedure, our hearts went
out to our helpless child who did not understand why this was
happening to him.
Over the years, we have discovered that Toby has many of the
allergies that so commonly plague EE victims. He has found no
relief, whether indoor or out, as these things that others take
for granted, like breathing the fresh spring air, must be ever
masked, to avoid contamination. Toby's diet is extremely limited
and family outings to a restaurant are a thing of the past.
Doctor's continue to treat both the disease and the symptoms,
though there is no cure yet. Toby's regular routine will continue
to include periodic scopes, to access continuing damage, and
he may eventually have to use a feeding tube, to avoid, the
constant pain and ulcers in his digestive system. Toby has
grown wise beyond his years, as he truly has learned to
appreciate what we have commonly taken for granted. He may
not know how to ask but he is grateful and hopeful that
organizations like C.U.R.E.D. may one day help him to enjoy the
carefree world that all children should have the right experience.

* If you would like to share your experience or story click here:  
Contact Us
Stories
Toby McQueen