“The day he got his KIF1A diagnosis was the day I stopped thinking ‘I just want him to get to live a normal life’ and I started thinking ‘I just want him to live.’”

A Message from Harlin’s Family:

Harlin has struggled since birth to do things that should come naturally for him. Simple things like trying to see, eat, hold a toy, and holding his head up are physically exhausting for him, and sometimes not possible.

Harlin has had difficulty eating since birth. In the first few months, his weight rapidly declined and he lost hair and toenails due to malnutrition. Those first months, we described him as ‘lifeless.’ Harlin didn’t cry, he rarely opened his eyes, and he only ate when forced. It was difficult to get him help because all of his tests were coming back normal, until they found out he was aspirating. He was then given a feeding tube.

At around 5 months old, we were told “we think he can only see light.” That was the day we realized something was really wrong with our sweet boy. What we thought was just feeding difficulties, turned into something much more.

We cried and wondered if Harlin could even see us? Can he see mom and daddy’s faces smiling down at him because of how much joy he brings us? And if he can now, how long do we have before he can’t anymore?

At 13 months old, we learned Harlin’s vision was not the worst of our problems. His genetic results came back, and he was given the diagnosis of KIF1A.

Our world had just stopped.

We learned it’s a degenerative neurological disease. We have since tried to come to terms that this disease will likely get worse for him. The day he got his KIF1A diagnosis was the day I stopped thinking “I just want him to get to live a normal life” and I started thinking “I just want him to live.”

Our family has learned so much from our tough little fighter. Harlin has the most contagious smile. He is the happiest and most easy-going kid we have ever met. Harlin LOVES music, hearing is his strongest sense, and he definitely uses it to his advantage. He loves listening to his older brother and sister play, they can make him laugh harder than anyone else.
Harlin participates in occupational therapy, physical therapy, vision therapy, and special instruction. He is currently working on his core and head control. We also work on oral feeding with him.

Learning everything we have about our sweet boy has been heartbreaking for our family. But we couldn’t be more grateful to have the KIF1A community. They welcomed us with open arms.

We will fight to help Harlin as hard as we can, while he continues to fight through everything life throws his way.

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