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I'm My Daughter's Biggest Advocate - by Melody Espitia

Let me tell you about my 1 in 2,000! My butterfly was diagnosed 20 years ago at the age of 6. We were blessed with an awesome pediatrician, pediatric endocrinologist, and a pediatric urologist who explained to us what Turner syndrome (TS) was all about. They helped us understand what life would look like for our daughter.

For those of you who have no idea what I am talking about, Turner syndrome is a condition that affects 1 in 2,000-4,000 females. Symptoms include short stature, infertility, heart defects, and certain learning disabilities, to name a few.

As a mom of a child with TS, I was scared to death for her. I learned as much as I could about it so that I could help my daughter feel as normal as she could despite her differences. My daughter does have medical issues and will deal with them for the rest of her life, and she has struggled with learning differently from her peers while in school.

Her super anxious fear of failing is what actually lead her to be able to complete high school and more than 40+ college hours in 4 years. This is not an easy task for anyone, but my girl did it! She is a warrior and doesn't give herself enough credit for the amazing things she has accomplished, despite her condition.

February is Turner Syndrome Awareness Month, and I want to share with you what the hardest part (for me) of being a parent of someone with TS is, as if looking different isn’t difficult enough.

Most people with TS often have difficulties with social skills and relationships. These challenges can lead to depression, low self-esteem, anxiety, and not being able to effectively interact with others. With that being said, it has been hard watching my daughter deal with people who she trusted or thought were her friends who do and say hurtful things, and she not even realize she was being bullied or mistreated. I have had to tell her on several occasions that it is not okay to be treated the way some friends and family have treated her in the past, and still continue to do so this very day.

My daughter turns 26 this year, and as her mom, I sometimes feel that I failed her because this world is such a cruel place, and she can’t find her “place” in it. She has been discriminated against more times than I care to discuss because of her size and other TS symptoms. Even standing in line at the store, she is overlooked as an adult, and it’s the adults who can be the worst! Haven’t you ever heard it isn’t polite to stare?

Anyway – this is just one of the bits of information about TS that I will be sharing during TS Awareness month. I am Mikaela’s biggest advocate and supporter. I truly from the bottom of my heart appreciate those of you who see Mikaela for the beautiful but feisty soul that she is, for being her friend, and treating her with the respect that she so much deserves! Thank you for being a part of her very small circle. Though she be but little, she is fierce!


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