Home>Service> Global Love of Lives Award> 16th Fervent Global Love of Lives Award> Li Tzu-Chieh, Taiwan—The Angel Who Fights MPS
I want to fly, and fly around the world—I want to travel around the world, and tell everyone: life is wonderful!
—Li Tzu-Chieh
 

Li Tzu-Chieh, a just-graduated student from National Tainan Girl Senior High School (TNGS), was born with MPS, a hereditary metabolic disorder which cannot be cured with medicine. Patients with MPS are short and skinny. Their bones are underdeveloped, causing the limbs to be crooked and their disability. Sometimes pressure on their viscera can even lead to their sudden death. Nevertheless, Li is grateful for all her parents’ love and care, and says that her life is “a path to grace,” in a self-mocking tone. She always encourages her younger sister Li Tzu-Yun, a first year student in TNGS, who also suffers from MPS and consoles her parents who “pretend to smile in the day but grieve and weep all night.” In their free time, Tzu-Chieh and her family visit schools, churches, and nurseries everywhere to share their own experiences and encourage people to face the challenges and cherish their life. With courage and perseverance, Tzu-Chieh faces her illness, lives with hope, dreams her dreams, and hopes to be admitted to NTU Math Department and become a scientist who shares her love with others. She is a true angel who fights MPS.

Parents and teachers are the best role models, “unique gifts” especially for them 
 
Li Chien-Hsiang and Tsai Hui-Chen, who run a daycare center, have great enthusiasm for children education. They have always been the role models for their students, educating them with so much love and care. However, the parents grieve at the thought of their two children. Tze-Chieh and Tze-Yun, two lovely and energetic teenage girls, are MPS IV sufferers. Their heights are under 100 centimeters, and they can’t walk by themselves. They have been discriminated, bullied and teased since they were born due to their disabilities. Li and Tsai, who have been expecting new lives, fell into the pit of despair. They “pretended to smile in the day but grieved and wept all night” for 10 years. The loving parents frequently brought the two girls outdoors to see the world and gave them much freedom in their growing process, taking good care of their physical and mental health. They swallowed down all the sadness, praying for a miracle. Because none of the family members has been inherited with the disease, some relatives of the Li family regarded this as bad karma, which made the mother so frustrated that she didn’t know how to carry on. In his most desperate moment, Li Chien-Hsiang found his way out by believing in Christ, and actively shared his thoughts with his wife. They eventually found the courage to carry on in God’s love, turning curse into blessing. Now, the parents know that their two daughters are the gifts sent by God despite others’ contempt. 

A blessing from God
Li Chien-Hsiang and Tsai Hui-Jen, who have become Christians, found that their two daughters were the “small angels” sent by God. They started to hold an optimistic attitude toward their children. In addition, they taught their children to know God and to take care of the people around them. They finally realized what true happiness is.
  
Talented sisters who live with passion

In order to foster their children’s confidence, Li and Tsai sent Tzu-Chieh, Tzu-Yun, and Tzu-Ping to piano, violin, and jazz drum classes. They got many talents and performed well at school. 
 
Li Tzu-Chieh and Li Tzu-Yun, who studied in National Tainan Girl Senior High School (TNGS), were born with a rarer hereditary disease—MPS IV. They are short and skinny, and the underdevelopment of the bones results in their disability. Nevertheless, all these sufferings do not stop them from living a passionate life. They were both awarded the President Education Award, Tzu-Chieh in 2008 and Tzu-Yun in 2009. The founder of the Chou, Ta-Kuan Foundation, Mr. Chou Chin-Hua has also visited them in person to encourage the sisters. 
 
Li Tzu-Chieh is now a third year student in TNGS, busy preparing for the college entrance exam. Her dream is to be admitted to the NTU Math Department. Li Tzu-Yun is a first year student in TNGS. She is an outgoing, optimistic, and active person. Neither of them is frustrated by their disability. They learn to play the piano and the jazz drums, and have an interest and a talent in painting. They have the passion for learning new things. Through their actions, they show their passion for life and how much they cherish their life. 
 
Li Tzu-Chieh is an ambitious girl who dares to dream. In her growing experience, she has undergone several life-threatening surgeries, but people’s love and care are always there to support her. Thus, she calls her own life “a path to grace.” What are the reasons that make her so courageous and optimistic about fighting the disease, and live a life filled with hope? The following is Li Tzu-Chieh’s self-description:

Walking through the Valley of the Shadow of Death

My name is Li Tzu-Chieh. I was born in Jan 2, 1995. I have two younger sisters. My parents were joyful about my birth. They read piles of childhood education books to offer me the best education, hoping that I would become a talented top-notch student someday. Of course I did not disappoint them! I could recognize more than 500 Chinese characters when I was one year old, isn’t that amazing?
 
Good times did not last long. As I grew up, what I did was not astonishing my parents with more amazing academic performance, but shattering their dreams. I kept asking for a thousand times, “Why me?” Because my mom felt that there was something wrong with my bone, she took me to several hospitals to have a check. Finally, I was diagnosed with a rare hereditary disease—MPS IV. Sufferers of MPS IV are very short, and will probably die in their childhood or teenage. What’s worse, there is no cure for it.
 
Mom and Dad were heartbroken. But there was another thing to worry—Mom was having a baby, and there was a 25 percent chance for her to have MPS IV. My parents wanted me to grow up in a pleasant environment, so they pretended to smile every day, hiding all their negative emotions. I was too innocent to understand their sufferings then. A few months later, what they didn’t want to see still happened—my younger sister was also diagnosed with MPS IV. My parents once again fell into the bottomless pit of despair.
 
Doctors could not cure my disease, so my parents went to the deities for help. They began a long journey, visiting temples throughout Taiwan to ask the deities what to do. Mom gave birth to my little sister based on the instructions of the deities. They have done everything they could in the hope that I would get better someday. 
 
Mom asked me to perform well academically. She told me that if I went on the stage more often, people would see me and respect me. However, getting good grades didn’t mean everything. I had to learn to ignore others’ teases. Mom talked to the teachers about me situation and thanked for all their help and care. I had many friends at school. When I stepped out of the classroom, there were always many classmates who were willing to chat with me and protect me. I was very smart and popular, which made me a six-time model student. This is my happy elementary school life.

To Know Jesus, to Know Myself
When I was a third grader, one of my classmate’s parents introduced my family to a church to attend the weekend activities every Saturday. Mom was opposed to it due to her religious belief while Dad considered it a good idea, so he took me and my sisters there. In the church, I listened to Bible stories, sang psalms, played games with more some 100 other children. After that, we went to talent class together. I felt true happiness there, because I felt loved and accepted. No one talked about karma and anything like that but praised God. The teachers, brothers and sisters at the church said that I was the daughter of God, who was unique and irreplaceable. 
 
Seeing that I became happier and more confident, Mom decided to visit the church to find out the reasons why I loved the weekend activities there. The moment she heard the beautiful psalms, she found the answer—it was love that made me so different. After a year of indecision, my parents eventually made up their minds. In 2005, my whole family got baptized and became children of God. 
 
My life changed a lot after my conversion to Christianity. I studied hard to glorify God instead of earning praises from others. I no longer felt inferior to others because I felt connected with Him. “He is the vine and we are the branches. In Him we live, enjoying everlasting joy upon our head. Although He has never guaranteed that there should be no storm in our life, He promises to be with us all the time. He will accompany me through every mountain and valley, and I shall live with all His blessings.”

Facing Challenge with Faith, Hope, and Love

In 2010, I was faced with an enormous challenge. My first and second cervical vertebrae compressed the respiratory center due to the accumulation of mucopolysaccharide molecules, and surgery was the only way out. This was a life-threatening surgery. 
 
All my families and friends supported me with love and prayed for me, and He responded to me with Jeremiah 39:17-18, “But I will deliver you on that day, declares the Lord, and you shall not be given into the hand of the men of whom you are afraid. For I will surely save you, and you shall not fall by the sword, but you shall have your life as a prize of war, because you have put your trust in me, declares the Lord.” I felt peaceful and decided to have the surgery. The date was two days after the High School Entrance Exam.
 
Though I walked through the valley of the shadow of the death, His love was always with me, transcending time and space. I was grateful for all His blessings when I was preparing for the exam and waiting for the surgery. I became braver and felt less pressure. Let me tell you more about what happened.
 
The doctor introduced me to the Make-A-Wish foundation. The wish I made was to become the designer of my own room, who was able to express my creativity not only on the paper but on the wall. I drew my blueprints on the paper and colored them. The sense of contentment made my life colorful. When everything was ready, many art teachers and volunteers began to draw my blueprints onto the walls of my room. They even told me not to see what they were doing until all were done. I was overjoyed that my impossible dream came true.
 
My homeroom teacher in junior high played my video in front of the class, which was about my family’s interview in a program called Touching Blog directed by Good TV. She also told the classmates about my surgery. My classmates wrote cards to me to wish me success in my entrance exam and my surgery. I felt love, warmth and care when reading the cards they gave me. When I saw the one written by my best friend, I suddenly thought of the promise I had made to her—being admitted to the best school, which was long forgotten due to my illness. I regained motivation for studying because I wanted to keep my promise. 
 
The principal, teachers, and classmates from the other classes also wrote down their blessings. I was so touched when I saw them. I was impressed by what my math teacher wrote, “Beautiful scenery usually appears where the road is not so easy,” which taught me to enjoy life even if I was in a slump.
 
God loves me so much. He encouraged me with one or two verses every day, and I put down all of them in my notebook. The verses became my spiritual sustenance. Knowing Him, I was blessed with much grace. Brothers, sisters, pastors from everywhere came and prayed for me together with my family. I went to Kao Yuan University with my mom to give a speech before the high school entrance exam, and everyone there showed their love and care. Through Him, we all loved one another. With all the encouragement from Him and people around me, I made it through the two months before the surgery. Because of their love, I seldom felt fear and panic. I was so grateful for all this grace!
 
When I arrived at the hospital in Taipei, the main surgeon explained the surgical process to me in detail. He said that I was so smart to understand all the complicated process and that he should have recorded our dialogue for patient education. Most important of all, he granted me two things. First, he would always be there during the surgical process which lasted for more than ten hours. Second, my mom could accompany me through the surgical process until I fell asleep.
 
When I came to myself, all I felt was severe pain. I was like a robot with four nails around my head, tubes and tapes all over my body. But I want to attend the graduation ceremony and hurry home to see the paintings on my room. All the hopes made me recover faster.
 
I attended the graduation ceremony as I wished, returned to Kao Yuan University to have a piano performance, enjoyed my dream room, and was admitted to TNGS. I had to change my lifestyle due to drawbacks of the surgery. I could not take a shower, but could only wipe myself with towels. I had to be very careful when cleaning myself up, and it took me more than an hour. I couldn’t walk by myself, and had to go back to the hospital every two weeks. I was awarded a SpongeBob at the graduation ceremony, which I dubbed “SpongeHope.”
(Four months later, the nails were removed. I took a long, hot shower on that day. It’s so pleasant and comfortable!)

Flying around the World

Having enjoyed the happiness of fulfilling my dreams, I became a person who loved to realize her dreams instead of just dreaming. I made another wish—I want to travel around the world and tell everyone that life is wonderful.
 
Although it sounded like a mission impossible, I believed that everything was possible as long as God was with us.
 
First stop—Macau. A couple from Macau was very touched by my speech, and invited my family there, where many people believed in Christianity. There were three sharing activities arranged for us, and I would be responsible for playing the piano. Thus, my wish came true soon after I made it. How amazing His grace was! In the six-day trip in Macau, I was welcomed and treated like a princess. This was such an unforgettable experience. I was so glad that I insisted on going abroad despite my disability. I wanted to be a happy “robot!”
 
Second stop—New Zealand. In May, 2010, I attended the annual international meeting of the Make-A-Wish Foundation. I introduced myself and the experience of realizing me dreams in simple English. After the meeting, I got a chance to chat with the representative of New Zealand. As she knew that I liked her country very much, she invited me to take a trip there. Coincidentally, school ended earlier that semester due to maintenance, so Mom and I left for New Zealand on June 20. Thank God!
 
Before our departure, I drew several small paintings and made them into brochures. I brought 30 copies with us and boarded the plane happily. Huh? Why was the flight attendant calling me? Oh, we were on board the same high speed train a few hours ago! She took special care of us, and we gave her a brochure. She was happy, and said that I should inform her if I was going to hold an exhibition one day. I learned a lot in the next few days—as backpackers, Mom and I had to manage everything by ourselves. Luckily, the Tourist Information Center there was really helpful, which became one of my favorite places. I could find a lot of tourist information there. After picking the places I wanted to go, I tried to communicate with the staff with my poor English. They were very friendly, and helped us book the tickets, told us where to take the bus, and recommended us cheaper hotels. Therefore, I became a frequent to the Tourist Information Center.
 
In the 15-day trip from North Island to South Island, we met 30 big angels, and countless small angels, who filled our trip with amazement. Although there was no speech to make in the journey, but I fulfilled my dream in a different way—in the chat with the local people on the street or the store clerks, I told people all over the world that “life is wonderful.” I thought this was a more practical way to convey that message, and I made a lot of friends. Maybe I would not see most of them again, but what we shared with each other would become the precious memories in our life. 
 
Third stop—Chengdu, Sichuan. My graduation trip was different from all my classmates’. Because a charity concert held by the Angel Heart Family Social Welfare Foundation was on the same date as the graduation trip held by the school, I had to make a choice. My family was one of the major members of the foundation, so I chose to go to Chengdu. When I recalled the journey from April 19 to 22, 2012, it was such a special story. 
 
I was excited and nervous on the first day. As soon as I arrived in China, the volunteers of the Angel Heart Family Social Welfare Foundation gave everyone a small piece of paper, saying that we should avoid saying sensitive words such as republic, president, belief, and prayer, because there were public security officers monitoring the whole concert.  
 
The journey on the second day was an eye-opening experience. I paid close attention to the scenery on the way, trying to find out the differences from Taiwan. When I arrived at the rehearsal site, I saw the staff working diligently, trying to make everything the best. However, “changes always come ahead of plans, and the leader can make changes anytime.” Not long after we arrived, bad news struck—the concert was cancelled due to security concerns of the Chinese government.
 
I was so astonished on hearing the news. Because this was impossible to happen in Taiwan! I was so frustrated that the disabled children there lost this great chance to let themselves be heard. (When local people saw me sitting on the wheelchair, they looked at me with disapproval. And I hadn’t seen any wheelchair on the road since I arrived in China. It was obvious that they didn’t really care about the right of the disabled.) What followed was a big change in the schedule. The feast was advanced, and on the third day we got to visit the Dujiangyan and the panda zoo. By visiting those places, we could also raise local people’s awareness of the disabled.
 
We sang psalms on the way to the airport on the last day. Although the concert wasn’t held, everyone believed that we would be back soon!
 
Fourth stop—under planning.
The First 4-In-1 Surgery in Taiwan

In 2011, I went to Mackay Memorial Hospital in Taiwan because I came down with otitis. At first, I thought that an ear tube surgery would be enough to cure my illness. However, the careful doctor found out many other problems. Eventually, a small ear tube surgery tu
rned out to be a 4-in-1 surgery containing removal of both tonsils, adenoidectomy, ventilation tube insertion and carbon dioxide laser angioplasty. Although most of the surgeries mentioned above were unprecedented in Taiwan, the risk was greatly reduced due to the advancement in laparoscope and laser technology. But I was still worried. After all, this was a respiratory tract surgery. 
 
Before the surgery, God once again encouraged me with His words—Psalm 131:2-3, “But I have calmed and quieted my soul, like a weaned child with its mother; like a weaned child is my soul within me. O Israel, hope in the Lord from this time forth and forevermore.” Thanks God! Everything went well in the surgery. The doctor said that if I had come to the hospital a bit later, they wouldn’t have been able to put the laparoscope into my respiratory tract.
 
I was grateful for all His grace. Although it was a holiday, the doctor came to the hospital to take care of me. He allowed me to leave the hospital in order that I could celebrate the Moon Festival at home with my family. In the two weeks after the surgery, I could onl
y eat porridge-like food due to the surgical wounds. This reminded me of my infancy, when I took in all these nutritious porridge-like food without much chewing. 

Breakthrough in Enzyme Therapy
After waiting for more than ten years, enzyme therapy had advanced to the stage of human experimentation. Good news for me! Since Oct, 24, 2011, I had to travel to Taipei for injection once a week. It was a tiring process but full of hope. Every drop of medicine into my vein was the hope for my recovery. The health check taken every three month monitored my health condition.
 
I travelled from south to north so many times that the train attendants all rec

ognized me. In most cases, the health check took three days. There was a time when I decided to go directly to Taipei alone after finishing the morning class, so I called my mom right away and asked her to buy the HSR tickets for me. Mom said, “Are you sure that you want to go by yourself?” “Of course! I am a passionate seventeen-year-old girl!”
A Different Opening
I remembered that every time I went to Kao Yuan University to deliver a speech, professor Sun introduced me using the same opening remark, “Have you ever heard that a mother asks her children to prepare and deliver a speech a month before a big exam and a major surgery?” Yes, that’s my mom. She taught me that studying was important but not everything. If there were only textbooks to read in my life, how dreary it would be! Thus, Mom insisted that extra-curricular activities be cut down but not totally cancelled when I had to spend more time studying. Striking a balance between study and play could prevent me from becoming a nerd. More importantly, I got the chance to broaden my horizons by attending extra-curricular activities. 
 
So I spent some time reading the Bible and praying on a daily basis. Every week I spent some time drawing pictures and playing the piano. “To rest is to prepare for a longer journey ahead.” Elders around me always told me about the importance of entertainment. I was thankful for my parents’ guidance, which led me to embrace a colorful life.

From Receiving Love to Sharing Love

Because God loved me, I learned to share my love with others. I agreed that to give was better than to receive. I felt happier when I shared with others. I attended the fundraising press conference of Ronald McDonald House Charities for building a second home for children with serious illnesses in remote areas. In 2010, I played musical instruments with my sister at the fundraising dinner party held by Make-A-Wish Foundation. I also delivered many speeches in Kao Yuan University, where my mom worked as a professor. But what impressed me the most was attending the concert held by the Angel Heart Family Social Welfare Foundation.
 
Since I joined the Angel Heart Family Social Welfare Foundation, my life had been enriched. I met many families with disabled children. We encouraged one another and shared our own experiences. There were regular gatherings for parents, disabled children, brothers and sisters. In addition to a monthly speech session, the foundation also held a respite camp and a concert every year. 
 
The 2011 charity concert was very different from the ones in the past. Besides orchestra performance, the stories of three member families were made into videos and played on the large screen, and my family was one of them. We got a chance to go on the stage to interact and sing with the audience. I was nervous and excited. We had five concerts in Taiwan and one in Chengdu. Although the preparation work was a bit tiring, this was such an unforgettable experience. 
 
I modified the brochure I brought to New Zealand and made it into a 20-page small book and shared it with people. I hoped that the people seeing it could be encouraged. I wanted to convey a message to them, “Come what may, God loves everyone. As long as there is love, there will be miracles. Do not live on your own, but care more about the people around you. Being disabled seems tragic, but as long as we are willing to let ourselves be heard, we can be the messengers of love who encourage people to love one another, to love every life. 

Telling everyone: Life Is Wonderful!

Many people ask me what I want to do after graduation, and I think the answer is quite easy—going on to pursue my dreams.
 
I like drawing, writing, reading motivational books, and playing the piano, but those are just my hobbies. What I like to study in mathematics because I think math is really a cool subject. I have loved math since kindergarten. The seemingly simple numbers can be used as the basic tool of many disciplines. After graduating from college, I want to enter the seminary and become a preacher so that I can focus on fulfilling my dream—telling everyone in the world that life is wonderful!
 
Although the road ahead is not so easy, I know that I am not along. God will accompany me all the time and send His angel to help me. Lastly, I want to encourage you with my favorite verse—Philippians 4:13, “I can do all things through Him who strengthens me.”