Child Of The Month
By Barb Corol
Oscar 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.
Niños Incapacitados sees its fair share of rare and unusual disorders, however Sindrome Cornelia de Lange is a first for us.
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 it 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, and problems with the digestive tract. Sometimes those affected are born with an opening in the roof of the mouth called a cleft palate. Seizures, heart defects and eye problems have been reported in people with this condition as well.
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 one year old and became a member of Niños Incapacitados just two months ago. The family is struggling financially and requires loans to enable them to provide the appropriate care.
At the moment, little Oscar’s treatment plan includes multiple x-rays, blood work and hormone therapy. He is also taking an anticonvulsive medication. A blood transfusion is scheduled for July. To date, Niños Incapacitados has reimbursed the family 6000 pesos.
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 and mom Claudia says he is a happy child. He is well loved by his siblings who are indeed spoiling him.
Rich Petersen who usually writes our “Child of the Month” articles, is taking a well deserved break for a couple of months. As Director of the Jocotopec Clinic, I’m delighted to have the opportunity to introduce you to some of our children. It’s too far for them to travel to be introduced at one of our regular monthly meetings, so this is an ideal forum for you to meet them.
Please note that Niños Incapacitados regular monthly meetings are suspended for the summer months. They will however resume again in September. Niños Incapacitados clinics in Chapala, Ajijic, and Jocotopec continue. If you would like to see firsthand what we do, please do not hesitate to contact Rich Petersen (376-765-5511) or Barb Corol (376-766-5452) to arrange a visit.
If you would like to learn more about Niños Incapacitados, please visit our website at www.programaniños.org