Kyra's Story: Parent's Letter Project Turner's syndrome- Kyra's mom

Almost three years ago, my husband and I received the news that our baby daughter had Turner's syndrome. It had been a long first year of doctor's visits, hospital stays, and lab tests trying to determine her "failure to thrive" (why she wasn't growing). It was very frustrating. The news wasn't good but at least we knew what was wrong and how to manage it.

After the initial shock, concern, and sadness, we scheduled various doctor's appointments to determine the severity of her syndrome. We received, and continue to receive, the best care from the specialists at Children's National - and primarily we now see Paul Kaplowitz, MD, chief endocrinologist, and cardiologist, Stanley Beder, MD. At first, everything was overwhelming but now we are on a maintenance plan. She takes growth hormone shots every night (6 days/week) and periodically has a doctor's visit but aside from her height, she's a normal, active, intelligent little girl.

Another source of support was meeting another mom whose little girl was diagnosed with Turner's about the same time. I had mentioned Turner's syndrome to an acquaintance who told me about her friend and she quickly put us in touch. We met a few times initially to share notes and experiences and now our girls meet annually. We feel it will be important for them to know each other, and other girls with Turner's, as they grow older.

I encourage you to talk to family and friends about Turner's syndrome; you'll be surprised how many people who know someone else with the condition. This will give you comfort and allow you to see that it's ok; that your daughter will be ok. I wish you strength during this complicated and emotionally overwhelming time!

Sincerely,

Kyra's mom, Ashleigh

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