Hello, my name is Velvet and my child was born in 1993 with a rare chromosome duplication known solely as tetrasomy 18p. NORD was imperative in helping me link to other individuals with similar diagnosis. In 1995, NORD directed me to the Chromosome 18 Registry & Research Society http://www.chromosome18.org/ where there were perhaps 10 parents listed who corresponded by letter-mail. Since that time; with the expansion of genetic testing and mainstreaming of computer networks, hundreds more individuals have been identified and have been brought together. My daughter, Samantha, sadly, passed away in December 2006. My gift - in Samantha's memory - is to bring further awareness to others and help families obtain friendship links. If you have or know of a loved one with a chromosome 18 condition, I encourage you to visit the Chromosome 18 Registry & Research Society and tetrasomy18p.ca groups.
Blessings!
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