YouTube has proven itself as not only a place to be entertained, but also a site where you can learn, share, and come together as a community.
Kirapika Smile Channel is a YouTube channel with a big goal – to build awareness for the SCN8A and to show that show that the lives of families of children with disabilities are fun and fulfilling.
They have some travel videos as well, so we couldn’t pass up the opportunity to ask them about travel with a medically fragile child.
Tell us a little bit about your family
We are a family of five living in Tokyo, Japan.
I have three daughters, the eldest daughter is 17 years old (no disability). Our second daughter, Yuna, is 13 years old and has Down syndrome. And our third daughter is Emma. She is 8 years old and has SCN8A – a rare disease.
Can you tell us a bit about SCN8A?
SCN8A is a rare disease caused by genetic mutation, and most patients have uncontrollable intractable epilepsy and intellectual disability. Each person has different symptoms, and some children can walk and talk, while others are bedridden and live with artificial respirators.
There are still many things we don’t understand, and American researchers are continuing their research every day.
When traveling with a medically fragile child, what is the process? What things do you take into consideration before going?
First of all, before going I check with the hotel
- Is the building wheelchair accessible?
- Can they prepare an appropriate meal (mixer meal)?
- Since Emma needs medical procedures like suctioning (removing phlegm from her airways with a machine) during meals, can they secure a place where other customers will not be disturbed while eating?
- Does the room have a bath?
- Before check-in, can the oxygen supplier and ventilator company bring the necessary equipment to the room?
…and if it’s okay, I’ll make a reservation!
After the reservation…
- Contact our doctor about the accommodation plan and get permission. (Ask them to write a document with medical information to show medical staff in case something happens while traveling.)
- Contact the oxygen company and give them the details of the trip. And obtain the doctor’s signature on the paperwork from the oxygen company.
- Contact the ventilator company and give them the travel details.
🟣Time to travel!! ️
⭐️ the most important thing is a pre-departure health-check! In order to be able to respond in case of emergency, we will bring as much luggage as possible, including temporary medicines and regular medicines. ️ (Even if there is a power outage, we have a backup power supply, and a foot-operated suction machine, etc. so we always have power …) – It’s like moving❗️
Then, all you have to do is enjoy! ️
Tell us about your YouTube channel! What was your reason for starting, and what would you like to achieve through it?
For about 10 years, I have been working day and night trying to take care of my children. Until now, I have spent a long period of time suppressing all my time and emotions for the sake of my children and family. There was a time when I was lonely and sad because I did not have time to connect with society and people for a long time.
Emma is finally able to go to school and I have some time for myself, but it is still not enough to have time to go out to work…
At that moment, I remembered that Yuna had told me for years that she wanted to be a YouTuber… yes! Through YouTube, I can meet and connect with people. I felt that I would be happy if I could be of some help to others!
And I hope that it will be an opportunity for as many people as possible to learn about Emma’s disease, SCN8A, which is still unknown by most people!
Any final thoughts you would like to share with our readers?
With the support a community, I want to enjoy and cherish every day we have with a smile! I would be happy if you would watch our Youtube channel too!
Thank you very much 😊
Since Kirapika Smile Channel’s goals are to spread awareness for SCN8A and create community, we encourage you to subscribe to the channel and share their videos!
Some of the videos are in English, and for those that are in Japanese, you can use YouTube’s auto-translate feature for the captions.
YouTube: https://www.youtube.com/@SMILE-dm1hj/
Instagram: https://www.instagram.com/kirapika_smile__kitchen_car/
Learn about SCN8A:
https://scn8aalliance.org/
https://scn8a.net/
If you have any questions or thoughts to share with Kirapika Smile Channel, please use the comments section below!
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