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Home>Service> Awardees of Fervent Global Love of Lives Award> 14th Fervent Global Love of Lives Award 2011> Sunshine Ambassador --- Wu Yi-hsin
Smiley Rare Disease Child ‧ Love for the Public
      “Everyday I smile to give back to this beautiful world”. The rare disease Niemann-Pick Disease Wu Yi-hsin speaks in optimism and her sweet voice expresses her courageous attitude to touch everyone.
 
      At 2 nd grade, Mother Wu accidentally found her loving daughter's movement was irregular; after two years of continuous exam by several famous doctors, they finally found Yi-hsin had rare disease Niemann-Pick Disease. As time passes, symptoms would appear on her body. She talked slower than she usually did. Her schoolwork did not improve. She walked unstably and she began to have swallow difficulty. It was expected that brother Yi-nuo would donate bone marrow to Yi-hsin; however, Yi-nuo was also diagnosed of the rare disease. The family was not defeated by the disease. Yi-hsin's strong and optimistic attitude encourages parents' Wu Chin- hui and Chou Li-ling so they took time to travel with two kids to the Africa caring for the poor. After the Jerusalem pilgrim tour, Yi-hsin's condition was deteriorating but she did not give up caring for people. She and her father visit schools and tell stories to encourage young people. They also successfully fight for monthly medical payment of 4~5,000 dollars for new medication health insurance allowance in order to reduce burden of parents.
 
A Considerate Little Sweetheart
      Born in 1992, Wu Yi-hsin studies in School for Mental Challenged in Taipei . She was clever and sweet since very little. Almost everyone says she is pretty. Before her birth, her father got ill and then had neck injury that disabled his ability to carry heavy loads. When she was two years old, she would ask uncle if he could play with her and let her ride on his back because her father was not able to due to injury. She was so considerate that she understood that her father was injured in his neck so she would not ask for him doing such a thing.
 
Surprise from “Niemann-Pick Disease”
      Yi-hsin was a very good student when she was in elementary school. Many awards from speech contest were the proof that she was smart. At the 2 nd grade, Yi-hsin was discovered by her mom that her eyeballs can only watch in one direction. If you hand her something, she is not able to take the object. At first, they suspected eyesight problem, then after diagnosis in eye department, the exam came back normal. Her abnormality includes movement not coordinated, constant choke when drinking water, slower speaking, bad academic performance. Her mother did not give up and tried to find the cause. From rehabilitation, pediatrics, hereditary department to brainwave, ultrasound, cat scan and blood work, for a 2 nd grader, drawing blood is painful. She always endures the pain to be little cooperative patient. The result always comes back “normal” or “cannot find cause”, very depressing. Finding the cause takes two years; after visiting famous doctors, in 2001, she finally was diagnosed Niemann-Pick Disease C type after fourteen days bone marrow examination and sent for a lab test in Australia by Taiwan University Yang Chih-chao. (Major cause is metabolism problem and cholesterol mass cause pathological changes of nervous system.) For now, it is not curable.
      In order to save the sister Yi-hsin, it was expected that brother Yi-nuo could donate bone marrow to his sister. However, the skin sample was sent to Australia and they got the news that Yi-nuo also got the same rare disease. This was a terrifying news without a doubt. Suddenly, Wu Family was in despair.
      Many people question about maybe they are going to give up! Will this kid be successful in any way? Besides, the Niemann-Pick Disease is still incurable; it is fatal. The response from Wu Family was they spent two years to adjust their steps side by side with their God.
 
Deteriorating body function --- Walking, speech and swallow difficulties.
      After learning the causes, father and mother brought Yi-hsin to check Niemann-Pick Disease information. She was very clear her condition and found the symptoms appeared on her body until she was not able to walk, speak and swallow. The uncontrollable situation did not discourage her and she still worked very hard to learn and exercise. She knows that exercise is good for the body so she would go to the school playground for a walk without interruption by weather.
      As matter of fact, father and mother know that Niemann-Pick Disease is incurable for now. However, the patient needs something to lean on! Yi-hsin and Yi-nuo are very brave and their mother cannot be pessimistic about their condition. So, they try many ways to find one that is effective somehow. Yi-hsin has the idea to bravely face every treatment to improve her movement and slow down the deterioration. She would swallow any kind of medication, acupuncture, massage and drawing blood. All she hopes is to fight for more time with the destiny even fifteen more minutes.
 
Courage to walk out and share lives
      Under this condition, she did not give up caring for others. In 2003, she and her parents became rare disease foundation ambassador visiting several medical association, nursing school, university, vocational high school, junior high and elementary school. In front of a group of people, she told them about “rare disease” and shared her life experiences with young school children. She told them life was precious so to cherish what you have. She would get scared if she saw stranger's curious attitude. More people would understand the disease if she is willing to talk about it. She still stands in front of people thinking that her sacrifice is meaningful and valuable. Tell young people the beauty and value of life and the priceless ability to move without problems.
 
Live a spectacular life --- Visit sacred ground Jerusalem , pray at cry wall, climb West Nile mountain and care for African poor children.
      Yi-hsin thought: “Although my life is shorter, I have to live more spectacular than the others”. In 2004, she and her parents and brother went to Jerusalem to visit sacred ground and the historical cry wall. She prayed to the God and hoped for the better that her illness would like a miracle of separation of Red Sea and recover. She also climbed the West Nile mountain, the Israeli people went Egypt . Although her body was not coordinated and she walked awkwardly, she was full of energy and patience to sit alone on a camel in a dark night. She insisted to climb 2,000 meter high and under zero temperature mountain. Her mother cried all the way but it was the first in Neimann history.
 
Forget about yourself when you see people in need.
      In 2005, Taiwan LienJiaEn in West Africa helped local people and Yi-hsin and Yi-nuo followed their steps. Two kids generously donated red envelop money and piggy bank and sent to the other side of the ocean. Yi-hsin and Yi-nuo went for West Africa to see local children with their parents. Under the 45 degrees sun, they brought small gift for children in orphanage. They also attended director Wang Xiao-li drama series and became the best replacement in [Under 45 degrees sky]. The personal experience of the third world that lacks materials and food has taught her she is relatively fortunate to live in Taiwan .
 
Live hard, brave and smiley.
      In junior high, Yi-hsin had little ability to live independently. Her grandma had to accompany her to school. She was not able to walk and even to swallow saliva. She still held on the learning opportunity, went to school and participated in school activity such as cooking, wooden ball, cleaning, and sporting event. She also happily faced the adversity with smiles on her face.
      In 2006, her swallow function was formally gone. For nutritious reason, she accepted artificial stomach surgery so that the nutrition can directly move towards her stomach. Whenever she was fed through the tube, people around her would get nervous but she always was comfortable without complaining. If you cannot bare the sight, her smile would become more courageous.
      After high school, her body and brain were in backwards and she insisted that she had to do what she had to do. She solemnly finished every question the teacher asked without complaining about her condition and she would not get discouraged because of the answer was wrong. Anyway, she has won the most glorious color of life.
 
Fight for new medication health insurance payment for rare disease disadvantaged.
      Since 2005, there is a new Niemann-Pick Disease medicine abroad. Yi-hsin and Yi-nuo courageously accepted the new medication and it cost 4~500,000 dollars for a month. For a long term treatment, it is a grand burden for Wu Family.
      Yi-hsin and her parents continuously work on collecting information. They would have a press conference and finally, after four long years, in August 2009, the new medication passed for health insurance payment and only a few Niemann-Pick Disease children here got the allowance, which a big victory for rare disease people.
      Although it is very difficult, she does not give up the intention to help others. Complicate public activity and her schoolwork and rehabilitation have made her a busy angel flying here and there. Mother Wu says: “As long as it is helpful, she would smile so happily and promise to come even if she is tired.” When making a commercial film, even for a short thirty seconds one, there are more than ten times NGs. Yi-hsin and Yi-nuo have already smiled for so long that their mouth would get numb. Yi-hsin has no complaint and behaves lovely for the camera according to director's instruction because she understands the importance of health insurance.
 
One More Breath, Please.
      Yi-hsin cannot open her mouth and swallow food. She cannot walk without assistance and she would choke very hard constantly because of her saliva. Her serious attitude towards life has not changed; this is why she can change and move people around her. Anyone who has seen her before would understand from the bottom of their heart what “real courage” is.
      Yi-hsin and Yi-nuo's achievement is not counted by years or months and days; they are counting minutes, seconds and hours. Their most magnificent achievement is that they do their very best to live longer. They win as long as they have one more breath.