Kylie's Story: Many of you know Kylie as a smiley, silly, sweet and loving little girl. Which is exactly who she is, but she is also a strong fighter that never gives up. 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. Her days do not reflect those of most 5/6 year olds. Her days are often packed with appointments and services and she effortlessly pushes through them with tremendous strength and her incredible light. I can't even begin to express how proud and lucky I am to be her mamma. A few years ago we found out that many of these challenges are due to the KIAF1A gene mutation. That's when our journey truly began.

WHAT IS KIF1A?
KIF1A Disorder is a very rare and degenerative neurological disease affecting children born with a mutation in the KIF1A gene. Researchers and physicians at Columbia University Medical Center are relentlessly working to discover treatment for every child living with KIF1A. We have an urgent need to accelerate this research, and your donation today drives us closer to a cure.

Fewer than 100 children throughout the world are reported to have KIF1A. There is no cure or treatment. Yet.

With your support, we will continue to fund intense clinical research to discover a cure for every child living with KIF1A. 

We are very lucky and thankful that Kylie makes gains every day, but a cure or treatment is crucial in order for her to continue on this path . Thank you to all who support and love us each and every day. We couldn't do this without you.

Want to join me in making a difference? I'm raising money to benefit KIF1A.org, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to us.

Love,
Jessica & Kylie