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Mayo finds young Illich afflicted with rare disease

Friday, December 28, 2007

Two-year-old Illich, a Honduran boy facing some major health issues, got to have appointments with more than a dozen doctors at the Mayo Clinic this past month, in part thanks to Mission Honduras Le Mars. He was diagnosed with a rare genetic disorder and his parents were given a life-long treatment plan. Not only that, he had surgery to restore his sight and was given a tiny pair of glasses to help him see.
The tiny two-year-old boy that Le Mars Mission Honduras helped bring to Mayo Clinic faces some tall odds.

Doctors at the Rochester hospital diagnosed the Honduran boy, Illich Rivera, with an extremely rare genetic disorder known as trichothyodystrophy(TTD).

There is no known cure for this illness, but lifelong treatment is a possibility.

In the last two weeks Illich was under testing at the Mayo Clinic, many doctors and specialists were involved in seeing this rare disorder -- many for the first time.

"I think this may have been the first case of TTD seen and diagnosed at Mayo," said Dr. Roshini Sarah Abraham, the lead doctor on Illich's case at Mayo.

Intense physiotherapy, occupational therapy and improved dietary intake and feeding are key to Illich's survival and growth, she said.

Richard Seivert, director of Mission Honduras Le Mars, said one website states that there are only 15 known cases of TTD in the world.

In spite of this genetic disorder, an immune deficiency, blindness, and a number of other ill health issues, Illich has put on some weight while in Rochester (He weighed only 11 pounds when he arrived, and now he now weighs about 13 pounds), and seems to have gotten considerably stronger.

"I think the general feeling is that Illich can live, he can grow up, he can improve with time and care, and have some semblance of a good life," Seivert said. "Time will tell on all of this."

Along with diagnosing Illich for free, the Mayo also offered to do surgery on his eyes to remove cataracts that were blinding the boy.

"His sight was immediately better and a special pair of glasses was ordered for

the little boy," Seivert said. "The doctors and nursing staff at St. Mary's did a

wonderful job with him."

Along with his mom Lissie and dad Juan, Illich Rivera returned to Tegucigalpa, Honduras, Christmas Eve afternoon. The family had entered the U.S. on October 19th, after Mission Honduras Le Mars received a charity waiver from the Mayo Clinic and the necessary visas. Illich and parents stayed at the home of Mark Kellen in Rochester during their nine-week stay.

Illich saw more than 16 doctors and had 55 appointments.

"He had every kind of test you could possibly imagine, and every doctor, nurse, therapist, translator, and researcher he came in contact with simply fell in love with this very sick little boy," Seivert said. "A few weeks ago I commented that Illich was in the best place in the world to save his life. I now know that to be true."

On going back to Honduras even before all test results are in, Illich's parents have been instructed in many ways to improve the condition of this boy's life.

Mission Honduras LeMars will continue to assist this little boy with the hope of seeing him improve.

"We know it is a life long process for this little boy, his parents, and his extended family," Seivert said. "They seem to be a very loving and devoted young family to this little boy, they have great faith in God, and great faith in the Mayo Clinic. If someday we must bring this little fellow back to the Mayo Clinic, God willing, we will."

Dr. Roshini commented that Illich's family support and structure seems to be excellent.

"His parents have been educated in the best way to provide care for him," the Mayo Clinic doctor said. "The critical element for his survival was making the right diagnosis. This has enabled the doctors and staff at the Mayo Clinic to offer the right advice, make the correct recommendations, and develop a treatment plan tailored for Illich's unique needs."

Mission Honduras Le Mars would like to thank all of those who have supported this effort.

"As a high school teacher I sometimes put the following at the end of tests: The End... or... Maybe the Beginning," Seivert said. "Let's all hope that the time Illich and his parents spent at the Mayo Clinic is the beginning of a long life for one little boy from Honduras."

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