“Her laugh and smile are infectious- you can’t help but join her!”

A Message from Norah’s Family:

We recently received Norah’s diagnosis in February 2022 after a year of meeting with different specialists and testing. KIF1A affects Norah’s balance, ability to walk, stand, eyesight, cognition, and speech. It also impacts Norah’s ability to regulate her own temperature. We are in the process of trying to get help with mobility for her to gain some independence, but it has been a waiting game which can be frustrating. Norah wants to walk and explore her surroundings upright in the worst way, but her legs will give out or she’ll lose her balance, so falls happen frequently.

Even with all these challenges, Norah still manages to be a motivated and happy little girl. Her laugh and smile are infectious- you can’t help but join her! Norah is brave, curious, and incredibly loving. She works hard with her speech, occupational, and physical therapists each week and has come so far in the past year.

We pray every day for a cure for this disease so that our daughter and others struggling are able to live their lives to the fullest and be able to do whatever they dream of. This disease is filled with so many unknowns and every case is different; we can only hope there will be a cure one day for our little warrior.

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