Lindsey Elsaesser
Hi Friends! I’m Lindsey Elsaesser, more commonly known as Lyla or Evie’s mom. I am a teacher by trade and currently stay home with our girls. Lyla, our first daughter, was born in 2007. After a few years I had apparently forgotten about the tramatic experience of giving birth to Lyla, and in 2009 we were expecting again. About half way through our pregnancy our second daughter, Evie, was diagnosed with a rare disease, and a life expectancy of a few minutes to hours if she survived until birth. I am happy to report that our vibrant little Evie not only survived, but is living life to the fullest capacity of her differently-abled body. She was re-diagnosed at two weeks of age with a rare bone disease, and is recieving treatment through a clinical trial at the Nebraska Medical Center. Our story continues as my husband John and I learn to love each day trying to keep up with our ever growing, hysterically witty 3 and a half year old Lyla, and her adorable little sis Evie, whose body has thrust us into the realm of the medically fragile community, and introduced us to special needs parenting.
Lindsey Elsaesser
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Hi guys, I just read your story. I am thrilled that your daughter is on medication that is helping. I know all about this disease and the heartache, stress that it can place on parents whose children are born with hypophosphatasia. I know because my mom and dad have 3 out of 6 that have this, and I am one of them.
I’m turning 50 next year and have the life experience of living in a body that is different from others. Don’t let anyone tell your child that she cannot do this or that. Adversity brings out the strength in most of us. Encouragement and understanding will last a lifetime.
I I wish Evie and the rest of your family much joy. Live life to your fullest!
Ed