LEESVILLE, La. -- Boy wasn't supposed to make it past first few months of life with extremely rare disorder.
When Darian Hutchinson of Leesville was born 11 years ago, doctors at the LSU Medical Center in Shreveport gave him three months to live.
Now a sixth-grade student at Vernon Middle School, Darian was diagnosed at 2 days old with a very rare syndrome: Megacystis Microcolon Intestinal Hypostasis Syndrome. He was only the 61st person in the entire world to be diagnosed with this syndrome, according to doctors.
Darian's mother, Jana Joiner, said the syndrome means that muscles are present in his stomach and intestines, but they don't work; gravity pushes down the food through his system somewhat, but he can't absorb nutrients or fully digest food.
After Darian spent the first five months of his life in the intensive care unit on intravenous feeding, doctors sent him home and said there was nothing more they could do. Joiner explained that so little was known about the condition that doctors were stumped.
“What they knew was just that these children do not live to be very old,” Joiner said.
Darian's family simply clung to hope until he was 5 years old, then started to explore the idea of a transplant operation. Since the first bowel transplants were performed in the 1980s, the success rate has climbed to almost 80 percent.
Darian will need a new stomach and a full intestinal transplant. The symptoms he experiences now, such as a large distended stomach, slow growth, dehydration, fatigue, posture problems, bloating and gas buildup, create some interesting challenges for the boy.
As a straight-A student, active member of East Leesville Baptist Church and soccer and basketball player, he has learned to overcome these problems.
But sometimes his discomfort causes him to miss out on normal activities.
“He has his good days and his bad days, but we want him to have a better overall quality of life,” Joiner said.
If Darian doesn't have the transplant, “it will eventually kill him," Joiner said. If Darian has to be intravenously fed again, it will destroy his liver, she said.
She said her family was considering the risky transplant when they read the story of Kylie Wallaser-Bush, a 17-month-old bowel transplant recipient, featured in the Leesville Daily Leader earlier this month. Joiner said that she contacted Kylie's mother and asked about her experience.
Joiner soon contacted the Georgetown University Hospital in Washington, D.C. Joiner and her son will travel there Aug. 12 to 17 to meet a team of 16 experts for evaluation and placement on a nationwide donor list.
As soon as his family gets the phone call that the donor organs are ready, he and his mother will get on a plane immediately, have his surgery and stay in Washington for six to 18 weeks. After that, every two months, Hutchinson will have to return to the hospital for evaluations.
Doctors estimate that his wait time will be six to 18 months.
Joiner doesn't know how her family will afford the expenses for the procedure.
And that does not include relocation and travel expenses for mother and son. They will have to find room and board during his recovery period, and because the time and date of the operation remain unknown, Joiner will have to pay high airline fares.
The family has started a “love fund” at Barksdale Federal Credit Union for people to donate money in Darian Hutchinson's name. The Joiners have made and are selling 250 raffle tickets for $10 each to help raise money for their travel expenses. The winner will receive $500.
Joiner said that she is also planning a dance at a local skating rink around Thanksgiving.
Those interested in helping the family can call Jana Joiner at 337-238-0094. The family's mailing address is P.O. Box 145, Leesville, LA 71496.
Leesville (La.) Daily Leader