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Amy Wang , 3, in her home in Santa Clara, Calif., on Friday, June 17, 2011. Amy has Fanconi anemia, a rare genetic disorder that causes a multitude of health problems that threaten her life on a daily basis.(LiPo Ching/Mercury News)
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For anyone familiar with the mighty struggle Amy Wang waged against her tiny body -- which kept trying to kill her -- the single word above her mother's web journal entry for June 5 required no amplification. Its meaning was as unmistakable as it was heartbreaking: Heaven.

Ning Liu, Amy's mother, kept an online accounting of the ceaseless barrage of disease and disability caused by Fanconi anemia, the rare genetic disorder that laid siege to Amy's life from the day she was born. When Amy died last week, she was 4 -- claimed by her body's rejection of a bone-marrow transplant from little brother Felix, who was supposed to be her "savior sibling." "Amy sleeps peacefully," her anguished mother wrote, "and has no pain now."

Her blood-platelet count had been dropping for two years, when her parents -- both engineers who came from China to work in Silicon Valley -- began their desperate effort to have a second child, whose cord blood could potentially extend Amy's life by as much as a decade. Amy suffered from medical anomalies that not even other children with Fanconi anemia experienced. She was born with an undersized head (microcephaly), microphthalmia (small eyes), which left her partially blind.

She was never able to eat solid food and had to be fed through a tube that ran from a pump in a specially designed backpack to her stomach. Most Fanconi kids are born without fully formed thumbs, so a finger on her right hand was transplanted to the thumb position when Amy was 2. The first thing she did with her new thumb was suck it.


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Because of hearing loss in both ears and a paralyzed left vocal chord, doctors thought she might never speak. So Amy learned an eight-fingered version of American Sign Language, putting her tiny face up to flashcard pictures her parents made out of junk mail, shouting the answers in a high-pitched voice. Triumphant, she would unfurl a smile so big it seemed impossible she was only 31 inches tall.

When her brother was born at the end of Father's Day weekend a year ago, after five rounds of in vitro fertilization with pre-implantation genetic diagnosis, Amy's prognosis for a longer life appeared good. But months later, she developed graft-versus-host disease, a complication almost as rare as Fanconi anemia, causing Felix's blood to attack his sister's organs. "The GVHD caused infection," said Amy's father, Xiaoqing Wang, "and then everything else started to go wrong."

Her mom and dad did what most parents would do in those circumstances. They fought to keep their child alive. But with Amy, the struggle to make sure her life was a bright and happy one had neither beginning nor end -- it was constant. Every minute. Every hour. Every day.

Last November, they moved the entire family to Minneapolis so Amy could be treated at the University of Minnesota Children's Hospital. They did not return to their home in Cupertino until last week, where they began planning Amy's memorial service, scheduled for 12:30 p.m. Friday at Lima Family Mortuary at 466 North Winchester Blvd. in Santa Clara.

Before they left Minnesota, Liu returned to her journal one final time to beckon her daughter home. "Daddy and mommy will bring you back home to California tomorrow," she wrote. "Please follow us and don't get lost. We will not hold you this time, because you can run really fast now."

Contact Bruce Newman at 408-920-5004.

A Mother's Farewell To Her Child

The day after 4-year-old Amy Wang died, her mother Ning Liu resumed her online journal (http://www.caringbridge.org/visit/amywang/journal) and bade her daughter goodbye.
"Amy, mommy can not believe that you are not here," she began, recalling the countless trips to hospitals all over the country. "I am waking up because I suddenly worry that your breathing tube might bent. And realize that I am not in hospital and there is no alarm from the machines. I can not touch your face and check on you now.
"I keep whispering to you 'Don't go any where, promise mommy, mommy is right here, stay with mommy.' And you nodded. But, Amy, my baby, you did it, you did it, you were there with me until your weak body failed. You never give up. Mommy is so proud of you, just like I said so many times! You always responded to me, "I am so proud of myself." Yes, you should. You tried really hard. You did not leave us but your weak body did. Nobody can do better than you. Mommy is so proud of you.
"Finally, you don't have so much pain and discomfort. You don't need so many tubes, lines, and catheters now and tons of medications. You are free. You can walk and run just like other children. You can play with other children now and we don't need to worry about infections. Please don't forget that I love you, Amy, my baby."