Reisen mit Rollstuhl & Beatmung: Wie ein Wohnwagen Emily neue Freiheit schenkt

Camping with a child on 24-hour ventilation – how does that actually work? Anna tells the story of how she travels with her daughter Emily, a wheelchair, a ventilator, and a specially converted caravan, and how camping gives her family a whole new kind of freedom. Emily is 15 years old and lives with a rare muscle disease called nemaline myopathy. Because her respiratory muscles are too weak, she requires 24-hour ventilation. In addition, she uses an electric wheelchair, has a tracheostomy, a feeding tube, and a lot of medical equipment. For the family, a vacation therefore means significantly more planning than just packing a suitcase and hitting the road. But that's precisely what they didn't want to miss out on. When Anna happened to discover a converted caravan with a lift and a hospital bed, the family decided: Let's just give it a try. In this episode of the Rollicoaster Podcast, we talk about: – how camping with a wheelchair and 24/7 ventilation is possible – what medical equipment is absolutely essential when traveling – what happens when the power suddenly goes out at the campsite – why a converted caravan has changed so much for the family – how they spontaneously travel through the Netherlands and discover new places – their experiences with hospitals abroad – what true accessibility means for Emily – why inclusion often has much more to do with attitude than with perfect conditions – and why Emily would love to see the whole world. An episode about traveling with a disability, about improvisation, accessibility, and self-determination—but above all, about a family that doesn't plan their lives around what isn't possible, but instead looks for ways to experience as much as possible together. 🫶 If you enjoyed this episode and would like to help make stories like this more visible, I would appreciate a like, a comment, and a subscription. ``` 💬 And tell me in the comments: What does accessibility mean to YOU ​​personally? 🔗 Links to the episode: Short videos: by private Follow Anna on Instagram: Instagram: anna.emily.real Follow ROLLICOASTER PODCAST on Instagram: Instagram: rollicoaster.podcast on Facebook: https://www.facebook.com/profile.php?... ROLLICOASTER PODCAST is also available on Spotify Follow ROLLICOASTER PODCAST on social media for more information, background, interesting facts, and specials on selected episodes. Sometimes my story also includes personal insights... Chapters of this episode: 00:00 Camping with 24/7 ventilation – Preview 00:32 Welcome & Introduction of Anna 01:38 Anna and her family 02:25 Nemaline Myopathy: Emily's rare muscle disease 06:49 Vacation with ventilation: What do you need to pack? 12:09 Why the family discovered camping 15:20 The accessible caravan with a lift 17:20 Weight, hospital bed & night shift in the caravan 22:07 Preparing tube feeding on the go 24:17 Power outage: What happens to the ventilator? 27:24 Bike tours with a wheelchair 29:56 Traveling between the sea, mountains & the Zugspitze 31:54 Traveling abroad with a ventilated child 34:39 What does true accessibility mean? 36:52 Disneyland Paris with a wheelchair 38:32 How wheelchair-accessible does a campsite need to be? 40:53 Amsterdam: When inclusion simply works 43:44 Emily as a teenager – talking with her, not about her 47:15 Living with a disability without letting it hold you back 48:07 Conclusion & Outro #Disability #Accessibility #Inclusion