“Harrison is the most amazing little boy who makes us all so proud everyday. He is very determined and independent, he loves school, absolutely loves the outdoors, and has a wonderful brother and sister who support him at all times.”
A message from Harrison’s family:
Harrison was a very fussy upset baby, we had no idea why and went through many problem solving options with doctors. First reflux then milk allergies and intolerances and a trial of different meds to try and help him, it wasn’t until we started realizing Harrison wasn’t reaching milestones that we knew something wasn’t right. We saw many many doctors who all just sent us away saying he’s lazy, he will catch up, I’m overthinking, and comparing him to my other children. When he was 7 months old he still couldn’t hold his head up, he didn’t roll, he showed no interest in anything, and just generally wasn’t happy. I went back to the Dr. and requested a referral to a pediatrician. We got an appointment when he was 10 months old and the Dr. spent 10 minutes with him and sat us down to say that there was something seriously wrong with our boy. It was absolutely heartbreaking but we also felt relief that all these months of upset and pleading for someone to help him and we had finally found someone who listened.
We then entered a world of chaos, we had appointment after appointment for months and with every result they found something else was wrong. Harrison was seeing neurologist, physiotherapist, OT, ophthalmology, orthopedics, neuro surgeons, genetics and so much more. All genetic testing kept coming back clear so after being undiagnosed with a massive list of symptoms including optic atrophy, cerebellum atrophy, spinal cysts, hypotonia, hyperextension, learning difficulties, dystonia/tics, ketotic hypoglycemia, and visual impairment we just settled into the fact that we may never get any answers and just took every day as it came.
Skip forward 7 years and Harrison is doing amazing! His strength and resilience is out of this world, he has the most amazing smile and the funniest personality he has progressed and can now sit and commando crawl to get around and his use of aids to help him communicate is improving every day. Last year we entered him into more genetic testing and in Nov 2022 we had a letter saying they have found his diagnosis and the reason behind Harrison’s disabilities. He was diagnosed with KIF1A. So far we know he has 1 copy of the faulty gene and one normal copy and it is de novo. It’s been scary at times because there is so little information on the condition and very lonely since it’s so rare but we are slowly coming to terms with it. Harrison is the most amazing little boy who makes us all so proud everyday. He is very determined and independent, he loves school, absolutely loves the outdoors, and has a wonderful brother and sister who support him at all times. We just want him to be happy, encouraged, enjoy his life, and we know he will continue to grow, learn, and love while inspiring everyone he meets. ❤️
