Meet Ellie (Isabelle)
Ellie was a beautiful and special little girl that flashed brightly across our lives.
Like many other children with KCNT1, she spent a lot of time in and out of the hospital. But, the day-to-day with Ellie was peaceful, happy, relaxed. A typical day with Ellie was spent cuddling, feedings, naps. You can snuggle right up to her cheeks, and feel her soft breath reassuring you that everything is going to be ok.
We came to define Ellie’s life not by what she couldn’t do, but rather, appreciate the simplicity of loving her for who she is. And love her we did. We would watch the ipad all day if we wanted. She would never be reprimanded; no time-outs, no spankings, she would never do any wrong.
Thank you, Ellie, for being our baby. Being your parents was the hardest, happiest, saddest, best parts of our lives.
Advice: You are the best advocate for your child. Be ready to fight. At the
same time, ask for and be ready to accept help in all its forms.
