This information I pasted from the website about the Cornelia De Lange Syndrome to define my son's problem.  His name is Leon M. Tran Jr.

Also, there is a picture of Leon Jr. on the bottom of the page.

Cornelia de Lange: Brachman de Lange: De Lange I Syndrome: Amsterdam dwarfism

Cornelia de Lange Syndrome is rare and affects between 1 in 40,000 and 1 in 100,000 babies born.

Children with the syndrome are small at birth and remain small compared to children of the same age. They are all slow learners but this varies from mild to severe. Most children have limb abnormalities which range from small arms to complete absence of the forearms. The most striking feature of the syndrome is that all the children look alike, like brothers and sisters.

Some children have other problems which include heart problems and gastro-esophageal reflux.

Inheritance patterns

    Sporadic incidence. The Medical research Council are funding a major research project at Newcastle University to identify the faulty gene that causes Cornelia de Lange Syndrome. There are also many research projects being carried out in both Britain and North America looking at many different aspects of the syndrome including behaviors, speech, language development and hearing. The result of these projects will be published in the medical literature and information will be distributed to families through the CDLS Foundation.

Pre-natal diagnosis

    There is no test that can diagnose the condition before birth.

    The information below has been drawn up by Dr Orlee Udwin of the Society for the Study of Behavioral Phenotypes.

Psychological and Behavioral Characteristics

    Most of the children have moderate or severe learning difficulties, but some have low average cognitive abilities. All have delayed or limited speech development and even absence of speech in classically affected individuals. In contrast to their often limited language skills, perceptual organization, visual-spatial memory and fine motor skills are particular strengths for these children. Teaching approaches which emphasize visual-spatial skills and visual memory (for example using computers or augmentative systems of communication such as pictorial or symbol systems) are therefore preferable to standard methods of verbal instruction. As they develop, many children are able to cope with their everyday needs, including eating, toileting and dressing, and they continue to acquire new skills even into their late teens and the mildly affected are able to live in relatively independent surroundings as adults.

    Children with Cornelia de Lange syndrome show great variability in their behaviors, but there are also many common features. In general, they are not very talkative, even when they have well-developed vocabularies. Many show autistic features, including diminished ability to relate socially, infrequent facial expression of emotion, rejection of physical contact, little reaction to sounds or to pain, and repetitive and stereotypic movements such as twirling. Many also show rigidity and inflexibility to change, and prefer a structured environment. The children often react with pleasure to vestibular stimulation, for example bouncing or spinning in a chair, although excessive sensitivity to sensory input and tactile defensiveness have also been described.

    Some children with Cornelia de Lange syndrome are placid and good-natured, but many others are described as restless, over active, distractible and irritable; this is most often related to gastrointestinal reflux which occurs frequently in children with Cornelia de Lange Syndrome. Self-injurious behavior and aggression are striking characteristics of the syndrome, and may include screaming, tantrums, biting and hitting self or others. The self-injurious behavior can occur in a variety of forms, for example picking at the eyelids, hitting the face, biting the arms, fingers or lips, picking and gouging the skin. Such behaviors tend to be stereotyped and performed repeatedly ,but they are different in each individual. In many cases the self-injury is relatively mild; in other cases it may result in scarring and tissue loss. It has been suggested that the aggressive outbursts and self-injury may be evoked by feelings of discomfort or frustration or by some painful physical condition. For example, in many cases temperament was reported to improve significantly after treatment for reflex vomiting. In other cases these behavior difficulties have shown a good response to behavior modification.

    Medical text last updated December 1997 by Dr M Ireland, MRC Clinician Scientist and Honorary Senior Registrar in Clinical Genetics, University of Newcastle, Newcastle-upon-Tyne, UK.