Creating a Safe, UV-Free Space: A Close Look at Takkun's Mom, Who Faces Xeroderma Pigmentosum!

Are you aware of any diseases that prohibit exposure to ultraviolet rays?

Ultraviolet rays don't only rain down outdoors. You can be exposed to UV rays indoors as well, such as in restaurants and shopping malls. For those who cannot be exposed to UV rays, this can be a significant cause of discomfort in their daily lives.

This time, we interviewed TAE, a culinary researcher and mother of Tak-kun, who has xeroderma pigmentosum.

Based on her experiences of feeling discomfort, TAE has been actively working to raise awareness about xeroderma pigmentosum, including promoting UV-cut films and publishing a picture book titled 'Tak-kun' in 2021.

We also delved into her feelings when Tak-kun was diagnosed with a rare disease and her goal of establishing a UV-free barrier-free space called "Clear Dome."

*Information was verified and updated on March 13, 2026.

1. What is Xeroderma Pigmentosum?

Xeroderma pigmentosum, designated as a rare disease, is said to affect only about 300 to 600 people in Japan.

Reference: Xeroderma Pigmentosum (Designated Rare Disease 159) | Rare Disease Information Center

The risk of developing skin cancer is said to be several thousand times higher than that of the general population, and exposure to sunlight can cause severe sunburn, taking 1 to 2 weeks to heal.

To avoid UV exposure, Tak-kun applies sunscreen and wears protective clothing, hats, and gloves when going out. He also carries a UV meter to identify safe places for him.

1-1. Disease Progression with Growth

[Interviewer (Writer): Akaishi / Interviewee: TAE]

Akaishi: Xeroderma pigmentosum is described as a progressive disease. How does the condition progress?

TAE: Currently, Tak-kun finds it difficult to stand, and when moving around the house, I support him by holding his sides as we walk together.

When he was born, he could walk and talk normally, and his catchphrase was asking me every morning, "Did you have a good dream?"

However, as he grows, symptoms of hearing loss have appeared, and intellectual disabilities have progressed, making his speech less clear.

Every year, as his birthday approaches, I feel both happy and anxious, wondering what he might lose the ability to do this year, which is honestly quite complex.

1-2. Things to Keep in Mind in Daily Life

Akaishi: What do you keep in mind in your daily life?

TAE: I try not to help too much.

While he generally needs assistance in daily life, to maintain Tak-kun's motor functions, I try not to help with things he can do himself, like holding the handrail together when climbing stairs.

Also, Tak-kun loves people and often greets strangers. I used to think I needed to stop him, but I realized that I was too concerned about others' opinions.

Tak-kun doesn't greet people because he wants a response; he does it simply because he wants to greet them. As long as it doesn't bother others, I try to respect his wishes.

Of course, if he laughs loudly in a movie theater, I do tell him to "shh" with a smile.

But I try not to compare him with other children or make assumptions about his actions.

2. Who is TAE?

TAE is a culinary researcher.

She had no prior experience interacting with people with disabilities and didn't know how to engage with them. However, after Tak-kun was born, she gained many insights.

She started her career as a culinary researcher with the desire to support Tak-kun through food.

He was diagnosed with the disease at the age of 2. It all started when spots appeared on his body and kept increasing, raising questions.

Unable to determine the cause at a local hospital, she eventually took Tak-kun to a hospital in Kobe for a week of testing, where he was diagnosed.

From here, we explore the roots of her journey from diagnosis to her current activities.

2-1. Realizing Tak-kun's Changes

Akaishi: Could you share your feelings when Tak-kun was diagnosed with xeroderma pigmentosum?

TAE: When I heard it was a genetic disease, I blamed myself a lot.

Researching the disease online, I found cases of people bedridden and unable to communicate, and thinking that my 2-year-old Tak-kun might face the same fate was unbearable.

There were already spots with potential skin cancer, and they were removed with a laser, but it was heartbreaking to see my small child crying and not being able to do anything for him.

Looking back, I can say that I honestly felt like disappearing with Tak-kun.

Akaishi: What stopped you from going through with that?

TAE: It was definitely the presence of my family.

When the week-long hospital stay ended, my family and parents came to pick us up by bullet train. We knew nothing about UV rays at the time, but my father wrapped Tak-kun in a UV-cut hoodie he brought, and we got into a taxi.

On the train, we asked everyone in the same car to close the curtains, and we all protected Tak-kun together on the way home, which made me realize the importance of family.

And my daughter was waiting for us at home, which made me feel that I had to protect these children.

2-2. The Story Behind the Picture Book 'Tak-kun'

Akaishi: What inspired you to create the picture book?

TAE: Tak-kun is said to have a life expectancy of 26 to 27 years. So, I wanted to leave a testament to Tak-kun's life, and I had always wanted to create a picture book.

Then, I had the opportunity to meet a picture book author, and as I shared my passion for the book, they resonated with it and decided to fully support the project.

Wanting to reach as many people as possible with the book, we sought sponsorship for 1,000 copies, and many people supported us, allowing us to create it.

Akaishi: The picture book is based on Tak-kun's real-life experiences. What episode left a strong impression on you?

TAE: It was when Tak-kun, my daughter, and I went to a pet shop.

There, a young brother and sister saw Tak-kun and said, "Hey brother, this kid's face is dirty." Of course, it was very sad at that moment.

But on a bus in New York, a child saw Tak-kun and excitedly asked, "That hat is so cool! Where can I get one?" They were more interested in Tak-kun himself than his illness.

In America, with its diversity in race, skin, and religion, and the integration of people with disabilities into society, there are many opportunities to interact with various people daily.

This realization also inspired the goal of building the Clear Dome.

Reference: Tak-kun | Tak-kun Project

2-3. What is the Tak-kun Project?