Emmy (short for Emaline) was born in July 2011. You can read more about those early months here: The Story of a Smile
Emmy is a very sweet, gentle soul. She readily gives hugs. She offers big smiles and says “hi” to anyone who looks her way.
She is also:
- drawn to animals
- a lover of food (gluten-free because she has Celiac disease)
- a tough cookie (She may be tiny, but even the biggest opponent would have trouble taking something away from her!)
Emmy was born with a genetic condition called Williams syndrome, which you can read more about here: What is Williams Syndrome?
The diagnosis of Williams syndrome falls on a spectrum so, while she has many qualities that are common to Williams syndrome (such as a social personality, small stature, sensitive hearing, and a heart defect called SVAS), she does not have others. One important thing I learned is that, even though it is easy to find a laundry list of characteristics that are common to Williams syndrome, it is extremely unlikely that any one person will have all of those characteristics. In other words, if your child has a diagnosis (any diagnosis), don’t assume that he/she will fit neatly into a box.
This picture brings back memories. It certainly falls into the cliche of “a picture is worth a thousand words.” This was taken when Emmy was in the NICU after her birth. She had a tough week being hooked up to machines, and I just wanted to take her home. I barely knew her, but I already loved her:
Thank you for sharing your story. It’s amazing to see your strength.
You’re friend of many years ago. Kelly
Thank you, Kelly! So glad you found my blog! 🙂
My daughter was recently diagnosed and I can really say that your blogs have helped me a lot with understanding and looking at the bright side of Williams Syndrome. Thank you for sharing your story about beautiful Emmy
Hi Rosalie. I’m so happy to hear that!! Thank you for reading. 🙂 -Vanessa