00:00When Christopher was born, he was really, really small and he wasn't gaining any weight. So we
00:05would take him to the pediatrician week after week after week. And I would say there's something
00:10going on with him. There's something wrong. There was a little bit more to the story for him. We
00:15knew that there was something else going on with him. So we brought him to a neurologist and the
00:21neurologist said, I'm very concerned about your son. And she right away ordered an MRI of his
00:26brain. They noticed that his cerebellum was not the same size as it should have been. It was much
00:31smaller than it should have been. He was diagnosed with a rare disease, congenital disorder of
00:36glycosylation. When he was two, we started traveling to California for therapy three weeks out of every
00:43year. And then we started going to Colorado for therapy twice a year. He was nonverbal, but he
00:49could use an AAC device to communicate. As his mom, I can truly say that I don't think that he
00:57wanted anything else. He was in the hospital frequently. He was underweight. Any illness
01:03that he would get, he would definitely need to be hospitalized.
