I have covered a lot of stories about families with unique challenges, but this family is definitely facing one of the most heartbreaking situations that I have encountered. Zac, their youngest son, has GM1 gangliosidosis and though his original prognosis was that he might live to 5 years old, it is now most likely 3 years old. He turned 2 today and is spending his birthday in a hospital getting a G-tube put in because he can no longer eat solid food.
It was with a heavy heart that I spent time with this family learning about Zac’s diagnosis, the fundraisers in his honor and their plans for what will probably be the last year of his life. They were very open and warm, in only a few hours with them I could see it in how they played with Zac, laughed with him over books and Mickey mouse and just held him as much as they could. Though I am glad I was able to share their story with our readers, it is stories like these that are the hardest to be a part of and that stay with you long after the paper has printed.