It's international Trisomy awareness month. Meet a miracle.
In Michigan a miracle named Lila is about to turn 18 months old. Lila was born in September 2012. Six days after she was born her parents were informed that Lila was “incompatible with Life” and would not live very long. Lila had Trisomy 18 or Edwards Syndrome.
I’ve never met Lila being that she lives in the United States and I don’t but I’ve had the privilege to be able to be able to watch her grow and develop after becoming friends with her mom Kayse on Facebook. Kayse is amazing. I’m sure she has her ups and downs but to me she always comes across as poised and ready to take on the world. I will never forget the day someone made a somewhat impolite comment on a picture of Lila and seeing Kayse’s reply. She so very graciously explained that Lila had Trisomy 18 and the picture in question was an example of one of the symptoms of Trisomy 18. I had to message Kayse to let her know how much I admired her and her reply yet another example of her grace and strength. Kayse told me that as Lila’s mom it was her job to educate people and spread awareness.
Even though I’ve never met Lila, I watch avidly for updates from Kayse about each milestone that Lila reaches. Every time she learns to do something new, I watch in wonder. The little girl who was compatible with life now knows how to crawl and loves Thor. Lila is a little girl who keeps fighting. She’s the most amazing person I know. Lila reminds me every day that you just have to keep fighting.
I hope one day Amy and I get to meet Lila.
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