Lori Di Ilio

Lori Di Ilio I’m happily married to Rob, my husband of 22 years. I’m the mother of Kaitlyn, who’s 16. Our first child Matthew would have been 19 but sadly passed away 3 years ago. Our unexpected journey began when, at age 4, Matthew was diagnosed with a rare progressive degenerative disease, Sanfilippo Syndrome. We suspected there was a problem but we never dreamt that it would have such a devastating outcome. Then everything changed. Our hopes and dreams were dashed. We went through stages of grief over the years. We became his caregivers, advocates, nurses, therapists and more. We learned to navigate the system to best serve our family and him. Though we endured many ups and downs, it’s an experience we wouldn’t trade for anything. Through him, we met the most wonderful people. We learned to find happiness in the adversity that goes hand in hand with having a disabled child. We have so much to be thankful for, most particularly, wonderful memories of him.