My name is Shawne

I live in St. Albert Alberta Canada - St Albert is a suburb of Edmonton and is just North of the City of Edmonton. in North-Central Alberta.

I was diagnosed in 1971 not too long after the discovery of this unique syndrome. At that time my family lived in Hamilton Ontario and I was very fortunate to have the services of Toronto's Hospital for Sick Children. When I was diagnosed there was no information for my parents to go on. Just instinct. I had surgery for Pulmonary Stenosis in 1972 and have not had any cardiac problems since then.

I am only 4'8" and have many of the classic characteristics of NS - low set ears - small chubby nose, wide space between eyes, poor muscle tone, cafe au lait, lazy eye, sparse hair (I have no eyebrows to speak of and at age 30 have never needed to shave my legs (this one is a blessing in disguise LOL ;-). I have a 17 degree curve of the spine bone growth retardation and some developmental delays (I was two when I learned to walk and then required a helmut because I kept falling down etc....(I am also a very picky eater and definitely had feeding problems as an infant/toddler, I still cannot tolerate some foods (red meat & pork are the biggies) but never used G-tube feeding as this just was not done at home etc in those days.

I am currently attending college for the second time and have previously worked in a bank... When I graduate in June I will make the Dean's list and receive an honors diploma for the Legal Secretary Program. Yes I have always had some problems with my self esteem and endured years of teasing and ridicule from peers and siblings ( I have two younger sisters who are identical twins and do NOT have NS - 15 months younger) The best part of this group is understanding more of myself than I ever have before. Why I was so different from my sisters and the general population. Until recently I never knew anyone else with this disorder. I have surprised my parents many times with a sense of zest. (like when I went skydiving 6 years ago) :-) My general philosophy on life is not too worry too much about the future as the only thing ANY of us is guaranteed is now. Yes, we are different but I prefer the word unique. Yes, we do have different goals and different milestones but they are still OUR milestones (my mom used to get excited if I gained 2 ounces a month as an infant)...

Shawne Flaherty age 30 NS AND PROUD OF IT!!!
St. Albert, Alberta, Canada