Hi, I'm Jenny and this is Maggie. She's 15 years old and lives with Rett syndrome. And I'm Jessie and this is Ruby and she's 16 years old and lives with Rett syndrome. And we are here today to play with puppies and answer questions from Buzzfeed. All right, let's see these puppies. Hi guys. Hi. Well, hello. Oh my goodness. Would you like to go on an adventure with us? She likes to be in the mix and hanging out with friends and listening to people talking and music and going fast. She really likes going fast.

Maggie loves going fast, too. I was going to say anything with adrenaline. Horseback riding, yes. Yeah, man. That's the biggie. I would say what brings you joy is those moments that happen with a typical 15-year-old and it's the same. Yeah, it's the same for you guys. Rett syndrome is a rare neurodevelopmental disorder that impacts how the brain functions and develops. There are about 6,000 to 9,000 individuals living in the US with Rett syndrome. The most common symptoms in Rett are loss of hand function,

which is like hand ringing or clasping or just not able to use them. Yeah. Breathing [clears throat] abnormalities. Gait or inability to walk. Ruby's not able to walk independently. Seizures, scoliosis. And motor planning. So, our girls communicate with their eyes usually cuz they can't use their hands and sign or touch even devices intentionally. So, we use Yeah, I'm talking about you, Maggie. We use eye gaze to communicate. But always with patience cuz they have delayed motor planning. It's hard for the brain to communicate to all the different parts. So, the way that I think about it is that a lot of things are really, really difficult which severely impacts how we live our lives, but we know

what's going on and our girls know what's going on. So, we treat them with just like we would want to be treated. Like I would want to be treated. Exactly. I think for me personally and for you as well is to presume competence. You're very smart. Individuals with [clears throat] Rett syndrome understand everything that's going on and it's just your body's not working for you and just because you Oh my goodness. You know what? If I could bark, I'd bark right back. Letting people know that just because you have a complex disorder like Rett syndrome, it does impede your life, but it shouldn't limit it and that's

what we like to get across. Just understanding like compassion and having open energy also to receiving people. If something's different, just being open to learn about it and not like different is strange, that sort of thing. So, just trying to be compassionate and understanding. And be kind. are and be kind and our girls are like totally typical on the inside. They just have uncooperative bodies. Just like these puppies. Uncooperative, but very typical of a puppy. It's just by saying yes. We say yes to life. We say yes to going for a bike ride when we're too tired. We say yes to everything. It's like the power of yes moves you forward and gives you a

positive outlook which incorporates living life to the fullest. Magnolia's Guide to Adventuring is adventures that we've been going on for the past 2 years with Maggie taking other families with Rett syndrome out and adapting sports such as surfing, hot air ballooning, ATV, swimming with dolphins, downhill skiing, Cross country skiing. I think we did 18 adventures and with the support of Acadia Pharmaceuticals, we were able to adventure and meet so many families. It gave us the opportunity to just share so much information because I think that being able to see somebody that seemingly has too many limits be limitless is a beautiful thing to watch and so we're very appreciative of Acadia

Pharmaceuticals for doing that for us. It gives a glimpse into our lives and the adventurous spirit of Maggie and other individuals with Rett syndrome, but it does more than that. Magnolia's Guide to Adventuring proves that kids like Magnolia may not lead a typical life, but they can lead an incredible one. To watch episodes of Magnolia's Guide to Adventuring, go to rettrevealed.com and while you're there, share your own adventure. Since Magnolia's diagnosis at 3 years old, we've gone through various stages and various symptoms of Rett syndrome have occurred. Once she started having seizures, I'd never imagined that we'd be doing adventures, but after we made it through that really

hard point in her life, that's all we wanted to do. We leaned into like it's go big or go home at this point. We made it through that. We're going to live as fully as possible and that's kind of what inspired this series. I think the most surprising part about Maggie is her want to experience everything in life that when we were first diagnosed, I never thought was possible. And because when you get diagnosed, told the truth. No, that was a good

I think there is a misconception about parents and individuals with Rett syndrome that we are doing something heroic because there are a lot of times people say, "Oh, I couldn't do what you do." or "You're such a special person." I don't think that it's us in particular or any parent in particular. I think it's when you have the love of your child, you rise to the occasion and I feel like every parent would do it. Yes. My advice to families that are newly diagnosed would be to share your journey with the people in your life that love you and we involved everyone in our journey from the beginning and it's been amazing. We got our diagnosis

at just over a year old and all of our friends just joined us. So, I feel grateful to have that support. I think it's really important and I think you just got to go for it and not be scared cuz it's a lot and it just sort of blows you apart, but puts you back together better. I feel like, but it's scary getting blown apart. Yeah. I just want to say thank you to Acadia Pharmaceuticals because without them, we wouldn't have made this series. We experienced so many things that we never would have experienced and it was such a beautiful adventure for all of us. Thank you, Animal Haven because you guys all these puppies are available for adoption. Except for maybe one of them. Or two.

Really just one. To learn more about Rett syndrome and watch Magnolia's Guide to Adventuring, go to rettrevealed.com. Oh, thank you. Thank you, Ruby. Thank you, Maggie.