A 12-year-old girl living in Aichi Prefecture is facing a rare disease that only about ten people in Japan have. We followed her new journey and challenges, as well as her family’s support.
The Ogura family in Kariya City, Aichi Prefecture, celebrates a birthday. The family consists of a father, mother, and two daughters.
Kanami, the second daughter, is 12 years old. She lives with a rare disease that only about ten people in Japan have.
Q: What is Kanami’s disease?
“It’s hyaline fibromatosis syndrome. It’s a disease where tumors appear in many places,” Kanami said.
Hyaline fibromatosis syndrome is a condition where a substance called hyaline accumulates, causing tumors in various areas such as the skin, bones, and internal organs.
“There is a lot of genetic information, but this is one of the diseases caused by a small defect in that information,” said Dr. Kazuya Itomi, Kanami’s doctor.
Kanami’s parents first noticed something unusual about her body two days after she was born.
However, tests could not find the cause. It was about a year and a half later that she was diagnosed with hyaline fibromatosis syndrome.
“Unfortunately, this disease does not have a standard treatment. So, for now, what we can do is provide supportive care that prioritizes her quality of life,” Dr. Itomi said.
“When we learned there was no medicine or treatment because it’s such a rare disease, our emotions went up and down. Her bright personality really saved us,” said her mother, Mariko.
Kanami attends a special needs school in Kariya City.
On this day, she had a class on “independence activities” to improve and overcome challenges in learning and daily life.
Kanami, who will soon graduate from elementary school, was summarizing her disease symptoms.
“I looked up ‘joint contracture.’ What does it mean?” asked the teacher.
“It means that when you have fewer opportunities to move your joints, your muscles and skin become hard and shrink,” Kanami replied.
“If it gets hard and shrinks, it becomes harder to move, right?” the teacher said.
Knowing about her own disease is very important for Kanami.
“When she needs help or support, if she understands her own condition, she can clearly explain what she needs. That will be very important for her as she grows up,” said Asuka Takashima from Kariya Special Needs School.
Kanami’s condition is stable. However, before she started elementary school, there was a time when her life was in danger.
“At the end of the year before she started school, she was hospitalized urgently, and around April, we all went to see the cherry blossoms. Honestly, every year when I see the cherry blossoms, I still wonder if we can see them together next year,” said her mother, Mariko.
March 10. It was the day of her elementary school graduation.
“Dad, how do I look?” Kanami asked.
“You look cute,” her father replied.
“I’m off!” Kanami said.
“Graduation certificate: Kanami Ogura. This certifies that you have completed the elementary school course at our school. Congratulations.”
“Today, we graduate from elementary school. We made many memories here. I’m happy I made so many friends,” Kanami said.
After the graduation ceremony, the four family members took a commemorative photo. They celebrated this milestone with her older sister, Sana, who graduated from middle school this spring.
Kanami spent six years in elementary school while facing her disease.
“After six years, I feel she has grown and become more mature,” said her mother, Mariko.
“In kindergarten, she couldn’t move on her own, but now she can move herself in an electric wheelchair and do many things independently,” said her father, Takashi.
“I was very moved to see her doing things on her own today,” said her mother, Mariko.
A few days after the graduation ceremony.
“I want to donate my hair,” said her mother, Mariko.
Kanami wants to give the hair she grew over two years to children who have lost their hair due
