Living with a Son with Xeroderma Pigmentosum: A Close Look at Tak-kun's Mom

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

Ultraviolet rays are not only present outdoors. You can also be exposed to them indoors, such as in restaurants or shopping malls. For those who cannot be exposed to ultraviolet rays, this can be a significant cause of discomfort in their daily lives.

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

TAE has been actively working to raise awareness about xeroderma pigmentosum through activities such as promoting UV-cut films and publishing the picture book "Tak-kun" in 2021, based on her experiences of feeling discomfort in daily life.

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 confirmed and partially updated on March 13, 2026.

1. What is Xeroderma Pigmentosum?

Xeroderma pigmentosum, designated as a rare disease, is a rare condition affecting 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 thousands of times higher compared to the general population, and exposure to sunlight can cause severe sunburn that may take 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. The Progression of the Disease with Growth

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

Akaishi: Xeroderma pigmentosum is said to be a progressive disease. How does the condition progress?

TAE: Currently, Tak-kun finds it difficult to stand up, 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 habit was to ask me every morning, "Did you have a good dream?"

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

Every year, as his birthday approaches, I feel both happiness and anxiety about what he might lose the ability to do this year, so it's honestly a complex feeling.

1-2. Things to Be Conscious of in Daily Life

Akaishi: Are there any points you are conscious of in daily life?

TAE: I try not to help too much.

He generally needs assistance in daily life, but 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, so he often greets strangers. I used to think I had to stop him, but I realized 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. 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 say "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, Tak-kun's birth brought her many realizations.

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. The appearance of spots on his body, which increased day by day, prompted her to seek answers.

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

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

2-1. Realizing Something Was Wrong with Tak-kun

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 showed people who were bedridden and unable to communicate, and thinking that my just-turned-two-year-old Tak-kun might face the same fate made it impossible not to blame myself.

At that time, there were already spots with potential skin cancer, and although they were removed with a laser, it was really painful not being able to do anything for my crying child.

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

Akaishi: What made you reconsider that thought?

TAE: It was definitely the presence of my family.

When we finished the week-long examination, my family and parents came to pick us up by bullet train. We didn't know anything about UV rays at that time, but my father brought a UV-cut hoodie to wrap Tak-kun in, and we got into a taxi.

On the bullet train, we asked everyone in the same car to close the curtains, and by protecting Tak-kun together and returning home, I realized the importance of family.

And my daughter was waiting for us to come home, which made me think, "I have to protect these kids," and that was a big reason too.

2-2. Behind the Creation of 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 thoughts about the book, they resonated deeply and offered full cooperation.

With the desire to deliver the book to as many people as possible, we sought sponsorship for 1,000 copies, and thanks to the support of many, we were able 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, "Brother, this kid's face is dirty." Of course, I felt very sad at that moment.

However, a child on a bus in New York saw Tak-kun and said, "That hat is so cool! Where can I buy it?" with genuine interest. It seemed that the disease didn't matter much, and they were interested in Tak-kun himself.

In America, with different races, skin colors, and religions, people with disabilities are naturally integrated into society, providing many opportunities to interact with diverse individuals.

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?