. >> i think there is no one in our town with f.a.. >> a family friend familiar with the taylor family foundation suggested the penstons reach out for a bit of support. >> to watch these parents from the outside, all you want to do is get in front and help them and cushion the fall and reach out to them and see if if they've really spoken to everyone or see if they everything they need. >> i met one day and i told her about izzy and owen. she told me about wonderful organized. a lot of our families have rare diseases around sometimes you have to travel to go to a doctor or something. she says we can help you with that. >> cheryl: that is exactly what they did. they 74 the family travel to philadelphia to learn more about the disease and be with others just like them. >> it was really important to see other families and other people in person who are dealing with the the same thing. >> now, we know we aren't like alone in this battle. >> i can't imagine being that family and having no one to reach out to and by going there and not only do the kids get to meet kids like themselves, just

. >> i think there is no one in our town with f.a.. >> a family friend familiar with the taylor familyns reach out for a bit of support. >> to watch these parents from the outside, all you want to do is get in front and help them and cushion the fall and reach out to them and see if if they've really spoken to everyone or see if they everything they need. >> i met one day and i told her about izzy and owen. she told me about wonderful organized. a lot of our families have rare diseases around sometimes you have to travel to go to a doctor or something. she says we can help you with that. >> cheryl: that is exactly what they did. they 74 the family travel to philadelphia to learn more about the disease and be with others just like them. >> it was really important to see other families and other people in person who are dealing with the the same thing. >> now, we know we aren't like alone in this battle. >> i can't imagine being that family and having no one to reach out to and by going there and not only do the kids get to meet kids like themselves, just like me, the parents got to get