Molly's Story

Molly: I love being outdoors. I think it just stems from having so much energy as a kid and not being able to stand still, always needing to go-go-go. Go to a playground. Go do this. Get your energy out. And I just have learned to appreciate all of the nature that is in Washington State.

My name is Molly. I am 23. And I was diagnosed with a UCD when I was 3-and-a-half.

It was just something I kind of always knew that I had, and I think it was more of a revelation to realize that not everybody grew up the way that I grew up. Not everybody grew up taking X amount of medications or had to go to the doctor X amount of times, I think that was more impactful realizing, because I had always lived this way.

To see and feel like I looked different was more something to cope with. I was never a person to worry about taking meds in front of people. I never really hid it.

Managing my UCD with friends and being social can be difficult at times. There are meals that I can’t eat.

I’ve found that if I figure out what I’m doing food-wise before, if I look at menus, if I go online. I’m able to figure out what I can do, what I need, before I actually am put in that situation.

Do you want to get the door?

Grant: I do. I do want to get the door for you. I am a gentleman, so it’s kind of a requirement.

Molly: Every week, I like to do things very similar. I like routine.

My favorite thing to do with Grant, my boyfriend, is go down to the beach and walk around, as well as get froyo beforehand.

Yeah, it’s my favorite. Every week we’re like, “We need it”. Yeah.

Put this in this hand. Thank you.

Grant: Cheers

Molly: There we go.

It just seems kind of like a comfort date. And it’s nice because the beach is so gorgeous, especially in the summer.

My boyfriend, Grant, has been so supportive in terms of being able to take care of me when I’m sick.

Allison: Grant has been there every step of the way. Hospitalizations. Treatments. Crisis in our family. He’s been steadfast.

Molly: He has my back. And it’s just been really nice to have like another support person in my life that cares enough to continue, to show up.

I love you.

Grant: I love you too.

Molly: Thank you for joining me today.

Grant: Yeah, of course.

Molly: It means a lot. I just feel like I was able to, like, have a lot less anxiety while you’re there.

Having somebody like that is so meaningful.

Grant: It’s been a fun day.

Molly: You’re gonna miss the zoo!

My passion for animals has always existed. I want to continue going to school in veterinary medicine and work with large and exotic animals.

We’re at the Woodland Park Zoo. My favorite part was going and getting to see the bear play in the water.

Working with animals brings me joy because it’s a comfort that I get that I can’t really get anywhere else. It’s eases anxiety and just makes me feel like I am able to help and that, to me, feels so important.

Allison: It was difficult for her to interact with peers when she was younger…and she started gravitating towards animals. They were, they were loving. They were forgiving. They were accepting. And she, she found her peace there.

I think my UCD does define me but it’s not all in a negative way. I just think that it’s always gonna be part of me. I just don’t think it should define who I am as a person. It just defines my path.

Molly: Previously to RAVICTI, was a capsule, I…took for the same purpose, the same reason. It just was a lot more difficult because of the amount that I took, and at the age that I was, it was very inconvenient, and not necessarily as user-friendly as the RAVICTI was.

As soon as I transitioned, it definitely made my life a lot easier.

I think the most important thing that I want people to know and the reason that I’m sharing my story is there’s not a lot of us out, out there and sharing our story makes each other feel connected. I want that to continue.