Sign language access improved

Genetic Alliance Conference Review

"Martial Arts Parents" to compete Internationally

"Ask a Psychologist"

"Ask a Computer Expert"

"Dear Dr. Kim"

Past edition of the newsletter

 

 

"Martial Arts Parents" to compete in International Competition 

(cont.) Nicholas and CHARGE

cli

Nicholas was diagnosed with CHARGE syndrome at the age of 2 days.  We have dealt with the doctors under an individual approach to his care.  This has been very difficult.  Many tmes the different departments that we deal with had no idea what the other was doing.  We are seen by specialists in the following areas:  Cardioloyg, E.N.T., Genetics, Neurology, Ophthalmology, Respiratory, Immunology, G.I., Endocrinology, Sleep Clinic, and Audiology.  Nichoas has had many surgeries, including two ear, two eye, ear, throat and numerous other interventions. 

Besides CHARGE syndrome, Nicholas suggers from hypoglycemia, asthma, mild central hypoventilation, bilateral blepharopimosis, growth hormone deficiency, mocrocephaly, a retroverted odontoid peg and an abdormal corpus callosum.  He has been diagnosed as "deafblind" and is fed only by "G-tube".   During the first three years of his life, he was on oxygen 24 hours a day, and feeds for 21 hours.  Nicholas communicates using a combination of sign langauage and concrete or visual cues. While he has yet no verbal communication, its possible that any spontanious speech may be out of reach because of his additional disabilities.

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