“He is our warrior who never fails to light up a room and put a smile on the face of every person he meets.”

A Message from Keaton’s Family:

Our story starts when Keaton was diagnosed with low-tone and was slow to meet some early milestones. We were referred to a physical therapist for an evaluation, where he then qualified to receive services. A few months later, our PT suggested a speech evaluation, which then led to an OT evaluation. After he started receiving services, Keaton began to show improvement in small ways, but there were other concerns his amazing team of therapists worried about, one of which was his vision. After seeing two ophthalmologists and a few MRI scans, it was determined that Keaton had Nystagmus and cerebellar brain loss. Things started to fall into place and pieces of his puzzle were starting to be revealed to us as to why he struggled so much with daily tasks and why he continued to stay behind the curve compared to his peers. Our doctors continued to discuss genetic testing to see if we could finally connect the puzzle pieces of his current diagnoses.

On February 3, 2020, five days before his fifth birthday, we received his genetic testing results revealing to us that Keaton had KIF1A. This was overwhelming. Relief that we had an answer and scary because so much was unknown with this mutation and hearing that he would likely get worse as he got older.

Our journey to find answers led us to an amazing support system in the KIF1A.ORG community. To join with them and see the fight they are leading to produce a treatment for my son (for all of our loved ones that suffer with this) brought hope and encouragement to our life. Together with the KIF1A community, Keaton’s doctors, therapy team, and our family, we live each day with hope that one day Keaton will receive a treatment that will relieve the symptoms that hinder his body and to live a more normal life. He is our warrior that never fails to light up a room and put a smile on the face of every person he meets.


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    Lorre Gookin on April 28, 2020

    Our sweet Keaton! This boy is pure joy! We are so proud of the progress he has made. We pray daily for him to continue his progress and for a cure! Poppy and Nana love you Keaton!

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