Her Light Shines So Bright - by Kimberly Prince
Our beautiful butterfly, Harper, was diagnosed at 4 years old and is now 8. While pregnant with her, we had the genetic testing done and she tested positive (1 out of 5) for being a carrier for trisomy 18. After an amino and sonogram, trisomy was ruled out. But the perinatal specialist missed her Turner syndrome (TS) diagnosis all together.
I had sonograms every 2 weeks, from 13 weeks until 38 weeks, to chart growth, as well as weekly fetal monitor hook ups. She was 6lbs at birth and bigger than anticipated. When she was a baby, she never hit any of her milestones and had weekly occupational therapy sessions for months. She was growing, but at a slower pace than normal.
From 2 years old to 4 years old she had stopped growing. We were then referred to her amazing endocrinologist. The doctor took one look at her and said, "she either has TS or achondroplasia, which is a form of dwarfism. (I’ll spare you all the details of how terrifying that was to hear and how much I cried waiting for her test results).
Her heart is fine, but she struggles with learning difficulties, horse kidney, chronic ear infections and hearing loss. She recently had her 7th set of tubes. She's also been diagnosed with ADHD and pediatric bipolar disorder. She takes her growth hormone shots, which she calls her "mermaid juice". She also takes meds for her ADHD and BP. She struggles processing emotions and is often made fun of because she is so small. However, her light shines so incredibly bright. To know her is to love her! We always tell her that TS does not define who she is, it's just a small part of her BIG story!