Turner Syndrome Awareness

The butterfly is a symbol commonly used to reference those with Turner Syndrome

February is Turner Syndrome awareness month. Turner Syndrome is a genetic condition that affects development in females. It occurs when one of the X chromosomes is missing or damaged. About 1 in every 2,000 to 2,500 women and girls in Canada have Turner Syndrome. This condition can cause short stature, complications of the heart, underdeveloped ovaries and other medical problems. There is no cure, nor is it preventable, but it is manageable with the right treatments and care team.

My daughter was diagnosed with Turner Syndrome before she was even born, during my second trimester of pregnancy. Doctors cautioned me that only about 1 to 3 per cent of babies with a prenatal diagnosis will survive birth. Despite the unfavourable odds, my husband and I tried to be positive and hoped for the best.

Soon after receiving the diagnosis, I got in touch with the Turner Syndrome Society of Canada via email and then social media. I was looking for support and guidance, which I received in abundance. I learned about what symptoms to look out for as my child grew, as well as information about available hormone therapies. I started putting aside money for any treatments or surgeries she may want or need. I also found out about retreats, summer camps and social gatherings my daughter could attend every year.

Suddenly, the diagnosis was no longer as scary as it was initially. I realized my family and I could manage, and that our daughter could thrive. We were ready to welcome our little “butterfly” into this world. (The butterfly is a symbol commonly used to reference girls and women with Turner Syndrome.)

Unfortunately, we never had the chance to bring her home. Our little girl went into heart failure around my 21st week of pregnancy. She died the day she was born, in August 2017. 

One of the ways I keep my daughter’s memory alive is by supporting Turner Syndrome organizations. I donate at least once yearly and try my best to participate in fundraising events. These organizations are great support networks for those with Turner Syndrome, as they provide resources, financial aid, and special programs. Most importantly, they create a safe community where girls and women with Turner Syndrome can gather to discuss issues relating to their condition or just about life itself.

Please consider donating to a Turner Syndrome charity. There are thousands of “butterflies” out there who will appreciate any contribution you can afford.