【A Must-Read for Families with Medically Complex Children!】Recommended Communities for Building Connections Among Families

When you hear "about 20,000 nationwide," can you imagine how rare that is?

This number represents the children nationwide who require medical care.

As of May 2025, Japan's population is approximately 110 million, making this group a very small minority at about 0.016%.

The number of children requiring daily medical care, such as ventilators or tube feeding, is said to be increasing as medical advancements save more lives.

Still, due to their minority status, the feeling of "isolation" experienced by these children and their families is a significant issue.

Therefore, it's crucial to build communication among families with children requiring medical care.

This article provides an in-depth look at communities that foster connections among families.

Reference: Trends in Support Policies for Children Requiring Medical Care｜Ministry of Health, Labour and Welfare
Reference: Population Estimates｜Statistics Bureau of Japan｜Statistics Bureau of Japan

1. What Challenges Do Families with Children Requiring Medical Care Face?

"When you have parenting concerns, you consult your mom friends."

Such a common thing is not possible for parents of children requiring medical care. As mentioned earlier, due to their minority status, it's hard to find others raising children in similar situations.

Because of their small numbers, even professionals like public health nurses and child-rearing support centers have limited opportunities to interact with them, making it difficult to understand and support their concerns.

So, is there a place where parents of children requiring medical care can share their concerns?

While it may be difficult to find in the offline world, it exists online.

2. Introducing Communities Where Families with Similar Concerns Connect!

2-1. "Snack Toromi" - A Community for Families with Children Needing Meal Support

There are communities focused on specific disabilities.

One such community is "Snack Toromi," an online community created by parents of children with swallowing disorders who have difficulty eating or swallowing food.

When you visit their homepage, you're greeted with a slightly retro design and the words "Oh, welcome," just like a snack bar.

The page introduces the moms with photos, making it feel very welcoming.

By signing up and becoming a "regular," you can participate in casual discussions and Zoom events like seminars.

Being virtual, it seems easier to visit than actually opening the door to a snack bar.

The "Academic Toromi" section offers a wealth of useful information.

Additionally, it features recommendations for commercial foods and recipes by parents of children with swallowing disorders, which are must-sees.

Reference: Snack Toromi｜General Incorporated Association mogmog engine

2-2. Unleash

"Unleash" is a website filled with information for families and supporters of children requiring medical care.

It envisions creating a society where children and families needing medical care, as well as their supporters, can live comfortably.

In the experiences shared by moms of children requiring medical care, real voices about daily life are introduced, along with information to make daily life more comfortable.

There are also contents for children requiring medical care who want to enjoy fashion, which are quite insightful!

The helpful resources section offers free content that answers various concerns and questions.

With the appropriate use of images and videos, the content is easy to understand, which is another attractive feature.

Reference: Unleash｜Unleash

2-3. Tokyo Outing Project

The "Tokyo Outing Project" aims to provide various events with the goal of "places you want to go rather than places you can go."

It features events where families can enjoy time together without worrying about the eyes of others, even if they have medical devices or may suddenly make loud noises.

In the past, they have held events providing families with their first outing experience at Jimbocho Book House Cafe.

They hosted storytime sessions and curry bread-included exchange meetings, offering opportunities for family communication.

Additionally, events were held at ROSEGALLERY Ginza and Shiseido Parlor, allowing parents raising children requiring medical care to return to "me" time.

Participants enjoyed experiences such as professional hair and makeup guidance, portrait photography, and afternoon tea, spending time as "me" rather than "parent." It provides a chance to connect with others facing similar challenges, making it easier for parents who feel guilty to participate.

It's a warm initiative aiming for a society where everyone can be themselves together, and it's definitely worth participating in!

Reference: Tokyo Outing Project｜Tokyo Outing Project

2-4. Support Group for Children Requiring Medical Care and Their Families

The "Support Group for Children Requiring Medical Care and Their Families" is a service provided by Wings.

Wings is engaged in activities to realize an inclusive society where even children requiring medical care can naturally work, enjoy hobbies, and live in their communities.

The main content is the "National Map Creation Project for Families of Children Requiring Medical Care," providing a map to find nearby peers to consult with easily.

As of April 2025, there are 64 registered groups across 28 prefectures, and individual registrations are also possible.

They also host events called Wings Cafe, providing a community for parents to gather.

They not only host events but also work to spread the voices of participants to the government and the general public, which is another attractive feature.

Reference: Support Group for Children Requiring Medical Care and Their Families｜Wings

2-5. Tsubame no Kai

"Tsubame no Kai" is a website providing medical information on eating and swallowing disorders, tube feeding, and parenting information.

To alleviate anxiety, they host academic exhibitions and external institution training sessions.

By joining Tsubame no Kai, members can consult with each other about concerns via email and engage in exchanges.

The regularly held exchange meetings serve as valuable opportunities for family communication.

They also provide information on hospitals that can examine children with eating and swallowing disorders, which is convenient.

Reference: Tsubame no Kai｜Tsubame no Kai

2-6. Icare Kids Room

"Icare Kids Room" is a service established to provide a place for families with children requiring medical care to interact and receive advice from experienced supporters.

It's a community you should definitely join when feeling isolated due to the lack of nearby children requiring medical care.

On the Icare Kids Room website, the following communities and topics are available, and you can easily participate by simply registering as a user.

• Illness
• Medical Care
• Medical Welfare Services
• System Allowances
• Therapy and Play
• Disaster Preparedness
• Meals
• Outings
• Preschool and School Enrollment
• Medical Equipment and Welfare Tools
• Family Room
• Supporter Room
• Regional Room
• Other Rooms
• Living

There are many participants in the community, and active communication is taking place.

Reference: Icare Kids Room｜General Incorporated Association Spesapo

2-7. Kakehashi Net

"Kakehashi Net" became a specified nonprofit corporation in December 2020 as a parent group for raising children with medical care needs.

Based in Tsukuba City, Ibaraki Prefecture, they host fun events and make requests to local governments.

They regularly host summer festivals, and in 2025, over 210 people participated, making it a great success.

They also plan to co-host roundtable discussions with the Tsukuba City Association of Parents of Children with Physical Disabilities, offering many opportunities for easy communication.

Moreover, they hold seasonal events throughout the year, allowing for year-round participation.

Kakehashi Net's activities are gaining attention from various sectors and are featured in various media.

Reference: Kakehashi Net｜Kakehashi Net

2-8. Bakubaku no Kai - Living with a Ventilator

"Bakubaku no Kai - Living with a Ventilator" provides a community for people living with ventilators and those living with them.

Founded in May 1989, it originated as an in-hospital family association at Yodogawa Christian Hospital, hoping for safe and comfortable hospital life and the joy of living for children with long-term ventilator use, and it has a history of over 35 years.

In 2015, the association was renamed "Bakubaku no Kai - Living with a Ventilator," and as of August 2019, there were about 500 members nationwide.

Although based in Osaka, it has 15 branches nationwide, providing support over a wide area.

They hold annual general meetings, lectures, and exchange meetings in August, and member interactions occur regularly.

Additionally, branch-level exchange meetings are held, providing a place for communication among families with children requiring medical care.

Supporting members can join for an annual fee of 3,000 yen, so if you're interested, why not join?

Reference: Bakubaku no Kai - Living with a Ventilator｜Bakubaku no Kai - Living with a Ventilator

3. How to Create a Society Where Children Requiring Medical Care and Their Families Can Live Comfortably?

There are many online communities beyond those introduced here.

Some are run by corporations or organizations, while others are run by individuals on a volunteer basis.

In the case of individuals, it may be challenging to host or continue due to the organizer's circumstances or other reasons.

If you encounter a community run by an individual, please help spread the word to ensure its continuation. You can repost on X (formerly Twitter), share it on your other social media, or introduce it to friends—whatever is easy for you.

Participate, spread the word, and contribute to its continuation.

Through small actions by each person, the recognition of children requiring medical care may gradually increase as it becomes more widespread in society.

If the issue becomes more recognized, it could lead to creating a society where children requiring medical care and their families can live more comfortably.

4. In Conclusion

It's a natural desire to want to "talk to someone" or "seek advice" when you're in trouble. This is the same for minority groups. In fact, because there may be no one in a similar situation nearby, the desire for connections and information may be even more pressing.

There may be support groups for parents of children with rare diseases or disabilities, but they may not exist in all regions, and joining an already established community can sometimes require courage.

For those who feel anxious about social interactions, such as "Is it okay for me to join?" or "I'm shy, so I'm worried about talking," the hurdle might be lower if it's online and anonymous.

If you're even slightly interested, start by taking a look. You'll likely feel that "I'm not the only one struggling."