Rare and Unusual

Vien Doan, July 28, 2011

This story can be filed in the rare and unusual category.

After we finished our first week of work, on Saturday I traveled north to scout locations for Mission 2012. Traveling by private car with my driver we passed the 17^th Parallel, the line that divided Vietnam before 1975. I had never been over that road before so we stopped and took a picture of this historic place. The bridge on the left hand side of this picture was where prisoners of war were exchanged.

We got back into the car and my driver asked: "Just over there is a family with some sick children, could you stop and check them out? I promised the family one day I will bring a doctor to see them." Wow that was pretty bold of him to promise something like that. What are the chances that he would be driving a doctor on that road? He apparently knew this family for a few years now just by stopping there often when he took tourists to visit the north. Well, since I always carry my medical bag traveling inside Vietnam I said "Sure, why not?"

We walked into a little house with a little shop in the front and inside there is a family of 5, the parents and 3 children. They wanted me to check out the 2 boys. This couple had their first daughter 20 years ago and she was healthy. Four years later they had a boy and to their dismay, he was born with 6 fingers and 6 toes. Other than that the young child looked normal until he was a few years of age and then they noticed he can't see as well while getting around the house. His mental capacity is also slower than children of his age in the village. They took him to various doctors in Hue and Saigon; had various tests done but no one could tell what the problem was and just gave him glasses which didn't improve his vision. As he grew older, his vision worsened. He could only see lights and shadows but can't read.

The parents were sad of course and thought of his future. “Who would take care of him should the older sister got married and they passed?" they asked themselves. So they decided to have another child just so this child could take care of his brother in the future and so 11 years after their second child, a third child was born. To their dismay, this child too has 6 fingers and toes. Immediately they knew the fate of the child. Indeed as this third child grew older and is now 5 years old, his vision is blurry just like the brother although mentally he is a little bit better.

As I examined both children, the 2 other findings that appear to be abnormal were their weight and one other. The rest of the family are thin yet both of them are a bit overweight. I had to dig far and deep to find a diagnosis and it is indeed a rather rare disease. This is one we only read about in medical school and I would dare to say 99% of us never saw one. Dr. Marti Baum and Branch were pretty good in recognizing the syndrome when described to them. According to the literature, there are only about 600 of these children worldwide and they suffer from a condition known as Lawrence-Moon-Biedl Syndrome, yet 2 of them sat right in front of me. It was sad to inform the family of the fact that there is no cure for it and the only thing they could do is to have regular check up to monitor for their kidney functions as the kidneys may fail in the future.

May God bless and keep them in His hands.