With her 2-year-old son on death’s door, a Japanese influencer decided to do away with perfect timings and fulfil her dream of taking him to Disneyland.
Although he sadly passed away soon after, she and her husband were able to give him incredible memories.
Source: @sekine.risa on Instagram
On Wednesday (8 Jan), she made a post on Instagram reflecting on her experience of raising her son before tragically losing him.
Risa Kitahama is a Japanese YouTuber who posts travel and beauty vlogs to her 1.27 million subscribers.
Because she posted so little about her son, her fans became worried that something was wrong. This led to her announcing in April 2023 that her son had been diagnosed with an incurable genetic disease called Epidermolysis bullosa.
The condition causes the skin to be very fragile, causing it to blister very easily.
Specifically, her son had a very rare and severe form of it called junctional epidermolysis bullosa (JEB).
According to Medline Plus, JEB causes blistering over large regions of the body, including internally. This can make digesting food difficult because of the blistering in the digestive tract.
Additionally, scarring of the blisters in the airway could lead to difficulty in breathing.
In the video addressing her son’s condition, she said that due to how rare the disease was, there were no doctors in Japan who specialised in it. Her husband also added that the condition was currently incurable, with only symptomatic treatment available. This meant that their son would have to live his entire life with the debilitating condition.
Because of how serious his condition was, it was hard to find the perfect time to take her son to experience things a child should.
Taking her son places could aggravate his condition, or he might even be in too much pain to really soak in the experience.
However, there’s no such thing as perfect timings, she said in her Instagram post.
So she bit the bullet and took her 2-year-old son to Disneyland.
To ensure that things went smoothly, the doctor and nurses even joined them on the trip.
Source: @sekine.risa on Instagram
During the trip, Ms Risa’s attention was focused on her son. Although people have told her that her son was too young to remember the experience, the facial expressions she saw in him confirmed her convictions that the experience left a strong impression on her son.
She knew her son was interested in sparkly things, so she made sure to take him to the Electrical Parade.
Her son’s eyes were glued onto the various sights and sounds as much as her own eyes were glued to her son.
The boy didn’t cry nor laugh but was simply absorbed by the parade. She even noticed how she could see the sparkling parade reflected in her son’s eyes.
Source: @sekine.risa on Instagram
“Even if they don’t remember it, it’s important to allow kids to have various exciting experiences,” she reflected in her post.
Sadly, her son passed away not long after the trip. Just before ringing in the new year, Ms Risa posted a video on YouTube announcing that her son had passed away at age 2 years, 7 months, and 12 days.
“It had always been my dream to visit Disneyland with my kids,” she wrote on Instagram. “I’m glad my dream came true.”
Although tragically cut short, she expressed gratitude for the time she had with her son.
“Thank you for being with me,” she wrote.
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Featured image adapted from @sekine.risa on Instagram.
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