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Kelly's Story

I am Kelly Ma as known as MA KAI-NI in the Mandarin Chinese language.  I am 45 years old and was born in the southern city Kaohsiung, Taiwan.   About 12 years ago I was diagnosed with HIBM, a rare disease. Ever since, my muscles have been getting weaker and weaker and in my daily life it gets harder and harder to perform simple tasks.  I share HIBM with two of my older sisters, one 49 years old and the other 53 years old.  

Nowadays, I have to use an electric wheelchair for most of my daily activities. I am a single mother and I find it very difficult to raise two children who are now eight and eighteen years old.  It was especially challenging for me when I gave birth to my youngest son, Mark, because I was in a weakened stated due to HIBM. However, I still had to take care of my baby all by myself.   Now, Mark has grown to be a healthy and very active child and is attending elementary school.

In recent years, I have been travelling around Taiwan to increase the awareness of HIBM.  I travel to schools and prisons and share the daily challenges I face and my personal story to students and inmates.  In addition to these activities, I was very fortunate to be able to open a small lunch-bar last summer.  This year, I along with two other partners, opened another restaurant called Red House which specializes in Chinese cuisine. One of my partners is my eldest sister, Joy Ma, who also suffers from HIBM.  Joy is at an advanced stage in the disease and is helped by a caregiver 24 hours a day.  My other partner is my friend Mr. Chu Gu-Li whose nick name is Eclipse.  Eclipse has suffered from Polio since childhood, and all of his limbs are seriously distorted.  Nevertheless, Eclipse is a successful businessman in spite of his physical disabilities.  

Joy, Eclipse, and I have a big dream "We would like to make the Red House Restaurant a friendly and supportive center for disadvantaged people to gather and eat delicious Chinese dishes.   Our restaurant business is just in the beginning stages, and hopefully it will flourish in the near future.  

As a saying goes, "When God closes a door, He will open another window for you." In May 2017, I remarried a wonderful man.  My husband has been very supportive of me in my day to day life and my business ventures. With all patients of HIBM from every corner of the world, we hope that an effective treatment for our disease will be available soon and hope we will all have a better life.