About Becky's Son

My son Rob has a very rare, chronic, intestinal disease, Eosinophilic Gastroenteritis.    

Due to this illness, Rob has not been able to attend school regularly since age eight.  He has been hospitalized most every year.  Like most families dealing with chronic illness, our days are spent juggling doctor visits, schoolwork, and keeping up with other appointments.  We never know what each new day will bring, so we’ve all learned to be flexible and patient. Needless to say, caring for my son and spending time with him is my top priority. I take things one day at a time and work on my art whenever time allows.

Here’s a little more information about the disease:
Eosinophilic Gastroenteritis feels like the stomach flu, but these intense symptoms never go away.   Symptoms include extreme fatigue, headache, intense stomach pain, diarrhea, and vomiting and joint pain. Most children develop bone loss and growth issues due to the steroids used to treat the illness and the lack of nutrients the body is able to digest.  Although not much is known about Eosinophelia, experts believe it is an autoimmune reaction brought about by an allergic response to food and/or environment.   Many kids with this illness are not able to ingest food and are fed through a tube inserted into their intestines.
 
In 2006, Rob's illness continued to flare out of control.  After exhausting most every known treatment (including steroids and formula- EO28, his sole nutrition) we began the search for alternative treatment.  Along with my doctor’s research, and through researching others with remissions, we learned of a drug that had treated this rare illness with very few side effects.  Ketotifen, although not approved in the US, has been used for years in other countries to treat similar chronic illness. 

With our doctor’s guidance we began this new treatment.  Several weeks after starting the medication, we began to see improvement.  Currently, my son is in remission.  It has been two years.  Although he is in remission, he still suffers from side effects. A virus or flu spirals into a long illness, and can aggravate the Eosinophils into thinking food is an outside invader attacking his body again.  We are very careful to not catch an illness.   

Although I’m not taking on as much work, my art is my therapy. I enjoy painting and drawing so much. Because of the day-to-day unpredictability of this illness, I am unable to book signings or other events that require travel, but do relish the time spent with Rob.  The many emails and letters sent from understanding friends and fans have helped me more than I can say.

Even with this illness, Rob has managed to persevere through difficult challenges both personally and mentally.   Although not the path I would have chosen for our family, it has made us who we are.  My son has a strong soul and is a fighter.  He has a wonderful sense of humor, and a quick wit.  I feel fortunate to be his mother, and wouldn’t want it any other way.  


BK