TS is Just a Small Part of Her BIG Story - by Kimberly Prince
If I could describe my 9-year-old butterfly in one word, it would be resilient. She is the most resilient person I have ever known. When I was pregnant with Harper Daisy, the genetic testing panel came back with a 1 out of 5 chance for being a carrier for Trisomy 18. After more blood work, sonogram, and an amnio, Trisomy 18 was ruled out. However, Harper was really small. From 14 weeks on I had sonograms every week to chart her growth progression, as well as biweekly fetal monitor hook ups to make sure her heart was ok.
All through this time, the prenatal genetic specialist completely missed her Turner syndrome (TS) diagnosis. This turned out to be a blessing in disguise, as I would have been riddled with anxiety the whole pregnancy. Harper was actually bigger than anticipated at birth, weighing 6lbs 2 oz. Her heart was fine, so there didn't seem to be any concerns, other than her being small and failing her newborn hearing screening.
She had a tough time hitting her milestones and she was in early childhood occupational therapy for months. While she was growing, the rate of growth was extremely slow. In fact, from age 2-4 her growth had slowed almost to a complete stop. It was at 4-year-old well check, that her amazing pediatrician recommended we see a pediatric endocrinologist for further testing.
The first time her endocrinologist looked at Harper she said, and I quote, "She either has Turner syndrome or achondroplasia". (Achondroplasia is a form of dwarfism). We had to wait almost a week for her results, and in that time, I googled everything I could find on both. Bad idea! I think I scared myself far beyond what was necessary.
She's had 7 sets of tubes in her ears, her adenoids removed twice, a tonsillectomy, and a minor sinus surgery. Her hearing issues have been a big problem for her. She also has ADHD and pediatric bipolar disorder. She takes her growth hormone shots, or "Mermaid Juice" as she calls it, 6 times a week, as well as other meds for her ADHD and PBP. We also found out a year ago that she has celiac disease. As we all know that autoimmune issues are common in those with TS.
More than anything, Harper is constantly aware of how her peers are maturing and growing, but she isn't. She is often made fun of at school for her size. She is called "tiny" and has been told that her TS is "fake" and that she is stupid for making it up. Kids are mean and words hurt. But words are one of the most powerful tools we have.
She really struggles with the ability to process her emotion in a healthy way. However, I would like to think my husband and I have taught her to advocate for herself and how to educate others on TS. Everything she does has a big purpose, and she loves to help raise awareness for the TS community. TS does not define her. It's just a small part of her BIG story. She will struggle, but she will also overcome. I hope she knows, more than anything, that she is loved, and she is resilient! Her light shines so bright, and she is going to change this world!