At 6 months she weighed only about 12 lbs. Her diet had consisted of basically only baby formula and it was time to start solid foods. Inevitably, her system could not handle this. She developed severe diarrhoea and became very ill, violently throwing up bile. We saw the doctor on a Saturday, who treated it as stomach flu. Things did not improve, and by Monday morning the baby's stomach was so swollen I could hardly close her sleeper. (Now we know that this was toxic infection built up in her bowels). At this point, she was deathly sick, dehydrated, hospitalise with all bodily functions (except her heart) ceased and in a convulsive state. There were tubes in every opening of her little 12 lb body and monitors and IV's attached everywhere else. She looked as if she had been in a horrific auto accident. Pumped full of antibiotics, she required emergency surgery to remove a bowel blockage, received an ileostomy and the Hirschsprung's Disease was then able to be clearly confirmed.

Although bleak for several days, a week spent on a respirator in intensive care and many prayers, the skilled medical professionals at Polyclinic Med. Ctr. (Harrisburg, Pa.) were able to nurse her back to health. About 2 months later, the area of intestines with no ganglion cells was removed and the "pullthrough" of nerve-populated intestine was done. About 2 months after that, the ileostomy was reversed. She was "surgically corrected" by her first birthday.

There have been some nuisance problems since, but nothing compared to the problems of that first year (more detailed account of ordeal in Gallery Section at alexis12.htm).

She was surprisingly very easily potty-trained. As she grew she gained improved control. As a pre-schooler, Alexis was very susceptible to stomach viruses and diarrhoea that seemed to last weeks. I was very concerned about how she would handle the school environment, but by the time she was 6, I would say she matured to a point where her body was adjusted - maybe her immunity kicked in or the flora of her intestinal tract stabilise - she missed very little school due to this.

In retrospect, I would have to say the worst was the uncertainty, the not knowing what was wrong. Our struggle prior to diagnosis was worse than dealing with what we knew we were up against. There were definitely times when I wondered if we would ever see the good times reflected in these photos. We were fortunate, though, that things turned around and followed a better course after we got the help we so desperately needed.

HD is such an unpleasant condition. It's embarrassing nature makes it difficult to discuss - it is not polite conversation.But when HD strikes, you can't be fickle - there is no choice but to stand strong and deal with it - it is life-threatening. Although unpleasant as it is, my mission is to promote awareness, unique understanding and support so that senseless suffering can be avoided and HD children can grow up well adjusted and productive, despite their trials and tribulations.