Child Of The Month

By Barb Corol

Oscar Roman

 

child may2016Oscar is the youngest of five children and lives with his family in Jocotopec. Oscar was diagnosed with Sindrome Cornelia de Lange often termed as Bushy Syndrome and more commonly referred to as Amsterdam Dwarfism.

Sindrome Cornelia de Lange is a genetic disorder that can lead to severe developmental anomalies.  It affects both the physical and intellectual development of a child. Although the exact incidence is unknown, Cornelia de Lange likely affects 1 in 10,000 to 30,000 newborns. Statistically is affects both males and females alike.

Cornelia de Lange syndrome is a developmental disorder that affects many parts of the body. The features of this disorder vary widely among affected individuals and range from relatively mild to severe. 

This syndrome is characterized by slow growth before and after birth, intellectual disability that is usually severe to profound, skeletal abnormalities involving the arms and hands as well as distinctive facial features. The facial features include arched eyebrows that often grow together in the middle, long eyelashes, low ears, small, widely spaced teeth and a small upturned nose. Many affected individuals also have behavior problems similar to autism.

Additional signs and symptoms can include excessive body hair, an unusually small head, hearing loss, short stature as well as problems with their digestive tract.

In the past many children with Sindrome Cornelia de Lange did not live past childhood as their medical needs were not known.  However therapeutic interventions, such as speech therapy, occupational therapy and physical therapy can help the child with this syndrome reach his or her full potential.

Oscar is five years old and has been with Niños Incapacitados since May 2012. He attends the School for Special Needs Children in Jocotopec where it was suspected that Oscar was having hearing problems. He has since been outfitted with hearing aids. His teacher also realized that Oscar was complaining of pain in his head. Follow up tests confirmed his head pain was caused by poor eye sight.  He now wears glasses.

As Oscar develops it will become more evident as to the degree of his physical/developmental manifestations and whether or not he will fall in the range of mild to severe.

For the time being Oscar appears to be doing fine. He is very active at school and at home with his siblings.  Now that he has the hearing aids, he is learning to speak and can say a few words.

Niños Incapacitados have helped the family with transportation, hearing aids, eye glasses, hormone therapy, medications and tests. To date we have reimbursed approximately $55,000 pesos.

As Director of the Jocotopec Clinic, I’m delighted to have the opportunity to introduce you to some of our children.  If you would like to see firsthand what we do, please do not hesitate to contact me, Barb Corol (376-766-5452) or Nicole Sergent (376-766-4375) to arrange a visit to one of our clinics.

You can also visit our website (www.programaninos.com) to learn more about Niños Incapacitados.

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