A family dedicated to change in their community

Kristin [00:00:06] I’m Kristin. I’m Mama. And this is Zoey.

Zoey [00:00:09] I’m the little sister.

Kristin [00:00:12] You’re the littlest sister.

Lily [00:00:15] I think it’s a wonderful family. Everyone’s sweet and nice and annoying at times.

Danny [00:00:22] Agreed.

Kristin [00:00:23] Starting from a very young age, even when Lily was very young and Danny was getting infusions, it was: Okay, Lily, can you help us with the Band-Aid™? Can you hand us the gauze? Let’s help. Can you help get stuff out for factor? Can you help clean the table? And then, you know, a second sister comes along and Eliana comes in and helps in the mix and she starts to take over the Band-Aid, and Lily gets to actually learn how to infuse or put the tourniquet on or we've kind of done it in stages that as Danny's gotten bigger, each of the girls has started stepping up to help more so that it's a family activity versus just Danny doing it.

Darlene [00:00:59] So it was at one of Danny's appointments that they didn’t feel necessary to give Lily an appointment when Danny’s appointment was over. We had a plan, and I leaned against the door and Kristin looked at him and said, “Now we need to talk about Lily. We live two and a half hours away from you. At 30%, can you promise me that she will be protected in the two and a half hours that it would take to get her to the hospital that knows how to treat her? We need an emergency dose.” And I knew he had granddaughters and I looked at him and I said, “And I want to ask you this: If it was your granddaughter two and a half hours away from you, at 30% clotting factor, would you not want her to have an emergency dose?” And he pulled his script out of his pocket. And Lily got her emergency factor dose.

Kristin [00:02:02] It’s just, it’s been a battle. And like Darlene said, it’s been definitely some tag teaming, good cop/bad cop, having conversations with doctors constantly of...this is not correct. If this was a boy with these levels, they would have factor, they would have an emergency dose. And we live far enough away from the hospital that it is very concerning. So we just fought, didn’t we?

Darlene [00:02:28] The Danny’s Dose Alliance was started by our family, the Shelton family, back in 2015 and we incorporated in March of 2016. Since then, we have been able to see our three main goals come to fruition, and the number one goal is to see changes in emergency protocols for pre-ambulance care through the emergency room care in several states. We also are working on a federal bill. Secondarily, we’ve been able to see the beginning of establishing training for paramedics and emergency personnel in a variety of different rare and chronic conditions. And then our third goal, of course, is to educate families. Because so many families have no idea when they pick up that phone and call 911 that they have limitations on what they can do.

Danny [00:03:27] One thing I think its cool name, Danny’s Dose, like that somehow goes together like, what a coincidence. And it's also fun having meetings. We get to meet new people, learn more about our hemophilia that we have not known before.

Kristin [00:03:43] We travel, we do sports, we ride bikes and do activities and try to stay healthy. And we’re part of our community. And I think that that's a lot, it’s given us a lot of freedom to still live a normal life.

Lily [00:03:57] We just have to be aware of the dangers of it can be.

Danny [00:04:01] I hope that one day we can invent cures for the diseases around the world, like deadly diseases, cancers, hemophilia, for example, other rare diseases, or maybe not even rare diseases. But so we can cure those and they can live a life that works.