*Note: We'd love to hear from you if you have a story to share! Please visit the Contact Us page for the e-mail address.
A story from a woman with TS...
Hi Everyone! My name is Tamara and I am an adult with TS, born and raised in Vancouver. I was diagnosed shortly after birth and grew up knowing that I was different and it was ok to be different. I have been involved with the TS Society since my early teens after attending my first national conference hosted by our Vancouver Chapter. Over the years, I have attended a few conferences and really enjoy meeting new faces and reuniting with fellow TS butterflies.
On the personal side, I enjoy getting together with the TS women to enjoy food and catching up. We also welcome new faces, so if you love food and need a laugh, please feel free to contact us at our Facebook group (Vancouver Chapter of the BC Turner Syndrome Network) or e-mail us at firstname.lastname@example.org. We love to hear from you. I also enjoy hanging out with my 2 nephews and watching them grow up. Watching Netflix and TV is another pastime of mine.
Lots of Love
A story from a parent ...
Zoe is my daughter (pictured to the left in her dance outfit). She was diagnosed at birth with Turner Syndrome (TS) and is now a delightful (yet exhausting) 4 years old.
After she was diagnosed her pediatrician monitered her to make sure that her pulses stayed strong, but unfortunatley after day 3 they began to drop and we were flown down to BC Childrens Hospital where it was discovered that she had coarctation of the aorta. On day 4 she was in for surgery and soon we would be sitting beside her in ICU for the next week. She took a little longer than hoped to recover from surgery, everything went beautifully but everytime they tried to take her off of ventilation she became stressed and they had to put her back on, but soon enough she was up in recovery and we would be able to spend time with our little girl until she was strong enough to leave the hospital.
It seemed like forever (which 2 weeks actually is when you're life is in a hospital) but soon we were able to take her home, still on a feeding tube, but we were adamant and she was strong. After this point she continued to thrive and grow to be the amazing girl she is today. We had our help with the infant development program as she grew but she showed no need for the child development program at this stage and the OT found no need to follow her, however I will always keep these services in mind as she gets older and may need some extra assistance.
We definitely had our hiccups along the way though, as most parents with TS girls will find. At 6 months it was discovered that she had reflux (yes! finally a reason she couldn't keep her food down!!!) which we were finally able to control once we knew what was going on. Then at 1 year 4 months she had tubes put in her ears for fluid that had built up; it was amazing to see her go from a clumsy, unsteady girl who still had not started to walk, to a girl who stood solid for her first time the day after the tubes were put in (and of course began to RUN after that point....and never stop). We however found a solution to both her reflux and her fluid buildup, we took her in for allergy testing and discovered she had a dairy allergy; once we took her off of all dairy products her reflux stopped and the fluid in her ears have yet to return!
Zoe's cardiology appointments were interesting; we discovered that she does not react well to sedatives (in fact, they have the opposite effect). We still have yet to get a proper echo done on her since her birth because she has not let them come near her without screaming and would not sit still long enough for it to be done. I am so excited for July when we get to go down and probably have our first echo now that she is old enough to sit still for them!
As for growth hormones, we are hoping to start in the next couple of months once we get our insurance all figured out. (To the left is a picture of Zoe (age 3) with her brother pointing to the growth chart where he was when he was 3.)
Anyone who knows Zoe would have nothing but good things to say about her. She is such a happy girl who can charm anyone! Although she is 4, she can debate like you wouldn't believe. She can make a great case so that she can get her way, it is VERY difficult to persuede her otherwise. She has already gotten her new preschool teachers wrapped around her finger. You'll see 1 teacher with 8 kids and 2 others on either side of Zoe with her talking their ear off.
Zoe would love to have some new friends, so feel free to give me an email, or even if you have any questions about what you have gone through (or might go through) with your daughter please don't hesitate to ask! email@example.com
A story from a woman with TS...
Hi everyone! My name is Debbie, and I'm an adult with TS. I was diagnosed at birth, so I've known about it as long as I can remember. I went to a couple of conferences as a child, one in Vancouver and an international Turner Syndrome conference in Toronto. They were both lots of fun, but for several years after that I wasn't involved with the society, but several years ago I knew I wanted to re-connect with others in the TS community.
I'm so glad I did! One of the best things about this group is the automatic acceptance you feel (I know others will agree with me on this!), and a sense of connection. The friendship of the ladies in this group has made my move to Vancouver last year much easier. We support and encourage with each other through the ups and downs in our lives, and also have some fun together as well. It's been great meeting and getting to know new people in the group the last few years.
A little more about me personally: I love to travel, love to read, I'm interested in photography and love to sing also. I enjoy spending time with my family, and being Auntie to my two beautiful nieces. I enjoy being a part of the Vancouver Chapter executive committee, and would love to connect with anyone who is new to the TS Society or TS in general! I am a member of our group on Facebook group (Vancouver Chapter of the BC Turner Syndrome Network), and you can also contact me via the e-mail on our "contact us" section. Would love to hear from you!