未分類

未分類

About Princess Rett’s admission to the facility

■ Introduction After receiving a talk from Mr. Tanaka of the Japan Rett Syndrome Association about Princess Rett's admis...
未分類

Fighting Siblings

~Through my experiences as Fighting Siblings~ Shinya Chiba (Nurse, Pediatric Surgery Ward, University of Tokyo Hospital)...
未分類

The joy of my daughter going out, the joy of coming home

Unexpected short stay length Japan generally has long vacations during the year-end and New Year holidays and in May and...
未分類

Things from a face-to-face board meeting after a long absence

―How should parents deal with their children who are Rett children?― Kazutaka Matsumoto, Director, Japan Rett Syndrome A...
未分類

The kindness of Analogue   Masataka Tanaka, Representative Director of JRSA

Happy new year! I look forward to having a good relationship with you this year too. For this year's New Year's card, I ...
未分類

Parents and children in the new corona disaster 

I, Shigeo Hasegawa (74 years old), have been living in Oyama-city, Tochigi prefecture for 17 years with my daughter Akane (44 years old) who is in a facility. Three years ago, a cruise ship arrived at the Yokohama quay, and there were reports of people infected with an unknown cause. In March, the hospital was closed to prevent infection. It was customary for me to spend the weekends with my parents and children from the time I entered the school until I entered the facility, but suddenly I couldn't even visit them. In my own way, I am going to see a doctor to maintain my daughter's current function, but I can no longer do that. She still has trouble sleeping at night when she wonders why she hasn't come to pick her daughter up. After that, I was able to visit for a short time, but I could not stay out freely. No way, at this age, in order to prevent corona infection, we are prohibited from going out and gatherings are prohibited, so I am most looking forward to it. We are grateful to the facility for preventing infections among children and people who enter the facility due to this corona wreck. From now on, I plan to regain the lost time little by little with my parent and child.
未分類

Longevity competition with own children

Jun Heguri (pseudonym) Parent of Rett patient I was informed by the Japan Rett Syndrome Association that the average age...
未分類

The kindness of Analogue  

Masataka Tanaka, Representative Director of JRSA Happy new year! I look forward to having a good relationship with you t...
未分類

A happy new year! From a father of one princess

A happy new year!  I wish you all the best in 2023 year. I am writing this email in the hope that I can be of some help ...
未分類

Ney Ney

Tomoki Sato, father of patient My Rett's daughter Chiharu has a younger sister named Koharu who is three years younger. ...