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“Emmery lights up every room that she crawls into. Everyone loves her. She’s always been so happy, sweet, and cuddly.”

A message from Emmery’s family:

Emmery was diagnosed shortly after she turned two. We started to notice some delays when she turned one. I took her to a geneticist and a developmental specialist who both said that they didn’t think there was anything wrong with Emmery. They thought she was behind because she’s a twin, and she was a little small at birth (4 pounds 13 ounces.) It was the third specialist that I took her to, a pediatric neurologist, who finally said that he did think there was something genetically wrong. He made the diagnosis five months later after a long battle with our insurance.

Emmery lights up every room that she crawls into. Everyone loves her. She’s always been so happy, sweet, and cuddly. She has recently become more opinionated and sassier, which we love. She and her twin, Maddox, love to play together and talk to each other. She also has a baby brother, Brody, who she loves and wants to constantly touch. Emmery started crawling and pulling up at 11 months old and cruising soon after that. She says over thirty words. Emmery can’t walk independently yet, but she is a professional crawler and walks around with her walker.

The hardest part of KAND is knowing that she will regress one day. It’s also so tough dealing with the falls and when she gets hurt, but she is the toughest kid you have ever met.

We are so very hopeful that there will be a cure soon! Since Emmy is so young, we are praying that the cure will come before she starts regressing. We are so thankful for everyone working so hard to find a cure and treatments!

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