KIF1A superhero Kylie header

“Kylie is the brightest and purest of lights. She is so full of spunk, energy and determination. Kylie has a smile that lights up a room and everyone in it. She helps us find laughter and inspiration in every day moments both happy and challenging.”

A message from Kylie’s family:

After missing a few milestones as a baby, my mom instinct kicked in, and we began the process of testing and evaluations. Kylie was then diagnosed with a rare genetic mutation, KIF1A, about four years ago. Unfortunately, developmentally we have faced and continue to face several obstacles, but our strength and faith has kept us going. Kylie is a true inspiration to us all each and every day.

Kylie is currently in first grade, working very hard daily and pushing herself to advance. In addition to the regular curriculum of a first grade student, she also receives vision therapy, occupational therapy, physical therapy and speech while attending school. We are very thankful for her school and the amazing team we have there. You can often find her strolling through the hallways with her walker, saying hello to all her friends both big and small. Her days aren’t done just there. Some nights she comes home to additional services and appointments after finishing her homework.

We have also been fortunate to become a part of several outstanding programs outside of school. She participates in the TOPS Soccer program, which is designed for any child with special needs. She also enjoys her hippotherapy sessions, which is a form of therapy through the use of horseback riding and is a fun way to build up her muscle strength. We often have follow ups with her team of doctors to track her progression and adjust services when needed. It can be heartbreaking to watch her work so hard at things that are so simple for others, but we never give up. It is so crucial that we find a cure.

Kylie pushes through life with tremendous strength and her incredible will to succeed. I can’t even begin to express how proud and lucky I am to be her mom. She is the light of our entire family and we are so thankful and blessed to call her our own! I count my lucky stars every day that I was chosen to be her mom and best friend.

Keep breaking those barriers, my girl! We are all so proud of you!

Comments

  1. 1
    Joshua Lieberman on February 28, 2021

    I’m so inspired by Kylie each and every day! Kylie inspires me to be a better person!

  2. 2
    Debbie Barone on March 1, 2021

    We love Kylie so much! She is a true inspiration to us all. I still remember the first time we met her at kindergarten orientation. She was the brightest light in the room. Keep shining Kylie! ☀️❤️

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