Child of the month – June 2009

CHILD
of the month

By Rich Petersen

Abraham Emiliano Ramírez Rivera

 

child-june2009While many of the children helped by Niños Incapacitados del Lago live with diseases and maladies known to most all of us, our Child of the Month this time was born with not one, but two, syndromes unknown to any of us in the organization, and probably unknown to most of you.

Here you see 3 ½- year-old Abraham Emiliano Ramírez Rivera, known by his middle name, Emiliano. He lives in Chapala with his mother Ana Rosa, and up until recently, his father. Little Emiliano has symptoms of both Goldenhar Syndrome and Duane Syndrome, both of which are quite rare.

Goldenhar Syndrome is characterized by incomplete development of the ears, nose, soft palate, lips and mandible. There can also be twisting of the spine. Its cause is unknown. Duane Syndrome is a congenital eye movement disorder, sometimes described as a “miswiring” of the eye muscles. The most interesting aspect of Goldenhar is that many children of veterans of the Gulf War have been diagnosed with it, so there is an association with exposure to certain toxins and toxic chemicals.

You can imagine how much of a challenge Emiliano is to the geneticists and other neurological specialists in Guadalajara. They have been following him since birth and are amazed at his progress. At birth his mother was told that he might not ever walk, talk, hear or speak correctly. He does suffer from severe farsightedness and crossed eyes, 12 of his vertebrae are crushed together (no separation), his left hand has contractures and he cannot open and close the fingers of that hand.

Emiliano can walk, talk and see. He will soon be fitted with special glass to try to correct his crossed eyes; if that is not successful, he will undergo surgery. He has already had surgery on his left ear to remove excess tissue, plus the surgery on his skull, as well as left eye.

His mother has kept meticulous records about these two rare syndromes and of all the treatments and care give to her son. It is almost beyond belief that he has survived so well and for so long. Just prior to taking this photograph of him in mid-May at Niños Incapacitados’ last monthly meeting, he recited his vowels and counted from one to ten. He walked with his mother around the patio and smiled at all those in attendance.

Much of little Emiliano’s care has been paid for by his parents, some by the hospital itself as his case is so interesting. His parents came to Niños Incapacitados just a few months ago to request assistance in whatever amount we could with the myriad of tests and other procedures he needs. Emiliano is anxious to start school, loves to draw and to make up stories. His own story is certainly amazing.

To learn more about Niños Incapacitados and the children we help, visit our website: www.programaninos.org, or write us at info@programaninos.org. The organization meets the second Thursday of each month at 10:00 a.m. at La Nueva Posada in Ajijic. Please join us there for a short business meeting and social hour. You’ll also be able to meet some of our children and hear their stories. NOTE: Meetings during June, July and August are not held due to many members’ vacation plans and travels. The next meeting will be Thursday, Sept. 10.

Ojo Del Lago
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