Riley is What the World Needs a Lot More Of

Riley is What the World Needs a Lot More Of

Riley, was diagnosed with Williams Syndrome when she was 2 weeks old. We first heard of WS the day after Riley was born, because she has such a LOUD heart murmur. We weren't allowed to be discharged until she was evaluated by a cardiologist. We were his last hospital stop of the day and he took a couple of looks at her and said "she looks like she has a genetic condition."

And let me tell you, nothing hurts more than hearing that your daughter looks different, especially right after birth when hormones are at an all time high.

He mumbled a few other things, but then eventually told us she looked like a baby with Williams Syndrome.

We immediately started googling everything there was to google about it. I cried, and cried, and bawled. For days...weeks even...until we got the official diagnosis; and then I cried for a couple more weeks. I was absolutely shattered. I have no shame in saying that it broke me. But we came to realize that there is absolutely nothing different about Riley except for the fact that she loves a little harder, sleeps a little less and needs a little more time to do whatever it is that she is doing!

Riley continues to have her own struggles, especially with speech and sleep. She has been in speech therapy for over a year and still has very few words. She has slept through the night maybe 5 times in her whole life and each time it happens we wake up in a panic because it is so unusual of her! We work with occupational therapists, speech therapists, developmental specialists you name it, we’ve done it! 

Riley is fortunate to have few medical concerns associated with WS. She has been followed by her cardiologist since birth for mild pulmonary stenosis that continues to improve as she gets older.  

Riley is the bright light that makes everyones day a lot better. She is the most loving, affectionate, rough and tumble babe we could have ever dreamed of having! To be honest, if I could change her diagnosis, I wouldn't. She is what the world needs a lot more of, especially during tough times like these. 


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