09/12/2022
Almost 4 years ago I took my son in to his Dr appointment because he couldn't fold his fingers and his frontal skull bone was protruded. That lead to the worse news any parent would want to hear. My son was diagnosed with a rare terminal disease, and the life span range of 8-15 years. There is a possibility of him making it to adulthood, he just has to beat all the obstacles he gets thrown.
As a newborn he failed his Newborn Hearing Screen. The first year of living he battled every breathing illness he could catch RSV, bronchiolitis, bronchitis, pneumonia, asthma, colds and chronic ear infections. He's had 7 surgeries in 3 years. When he was 2 years old, he had a total of 50 words and was able to combine them to let me know what he needs. Today he has maybe 3 words. Milestones that took him a long time and hard work to accomplish are now gone. He has hearing loss on both ears. His feet are forming in a way that make it hard for him to walk without falling. He uses AFOs to help him from toe walking.
He fights almost every system in his body. And still has a smile on his face. This kid is a warrior. Doesn't matter what obstacle he has to face, he does it and moves on.
There is no cure for Hunters Syndrome, yet. This disease effects boys all over the world. Rarely does it affect girls. It's passed down from the x chromosome. Here are treatments to help maintain the symptoms, but they aren't a cure. Join us in donating for a cure. If you are able to, please, donate. Share, like, do research anything helps.