Girl with glass bone disease evinces extraordinary willpower: Glass but not fragile

(VOVWORLD) - 33-year-old Nguyen Thi Ngoc Tam from Y Yen district, Nam Dinh province, who was born with brittle bone disease, can’t remember how many times her bones have been broken. The number is far greater than her age. While most people measure their life in years, Tam is forced to measure hers in days. Despite all her hardships, Tam has never let her condition hinder her from achieving her dreams and contributing to society.

Girl with glass bone disease evinces extraordinary willpower: Glass but not fragile - ảnh 1Nguyen Thi Ngoc Tam at a event to honor women who have contributed to improving the living conditions of people with disabilities, Hanoi, October 17, 2022. (Photo courtesy of Nguyen Thi Ngoc Tam)

"The doctor predicted that I wouldn’t live beyond the age of 30, yet here I am 33 and living each day to the fullest. I have never stopped devoting myself to social activities, achieving my ambition, and promoting positive human values to the community. I hope that when I pass away, I’ll be a beautiful memory for those who remain," Tam said.

Tam was honored as one of Vietnam’s Outstanding Young Faces of 2022, and won the National Volunteer Award in 2020. It’s difficult to believe that these achievements were accomplished by a disabled woman, whose body is smaller than that of a 5-year-old child.

"One of my legs was twisted up towards my stomach and couldn't be straightened. I underwent many major surgeries when I was a child. Afterwards, though I could straighten my leg, I still couldn’t walk, as my bones cracked again and again. I rely on my family members for daily support in even the smallest activities, like personal hygiene, eating, and sleeping."

Tam's bones are incredibly fragile and can break from even the slightest physical movement or from assuming the wrong position, which made it impossible for her to attend school with her peers. But Tam never sees her congenital disease as an inferiority or disadvantage, because a disability is simply an inconvenience, not a misfortune, she said.

With an extraordinary willpower to overcome her fate, Tam had yearned to attend school, develop social skills, and make friends. After expressing her desire to her parents when she was 7, Tam was allowed to go to school. Her first day of school is an unforgettable memory for Tam and her family. All of her family members escorted her to school, which was a significant milestone in her life.

"Raising a child is never easy, but for us, caring for Tam has been an even greater challenge. Unlike most children, Tam has needed the same level of attention and care as a newborn baby for over 30 years," said Nguyen Thanh Su, Ngoc Tam’s mother.

"To prevent any harm to her fragile bones, we must always handle her with extreme caution and gentleness. Despite the difficulties we face, we remain committed to providing Tam the constant care and support she needs. We’re very proud of what our daughter has achieved," Su added.

Even though Tam’s family was very worried about her health if she attended school, they sympathized with her desire to become a student.

"Though we were very concerned about Tam’s health at that time, my family and I were determined to send her to school. You have to know how to read and write to fulfill your life, otherwise it can become dull and uninteresting," said Nguyen Van Thanh, Tam’s father.

Girl with glass bone disease evinces extraordinary willpower: Glass but not fragile - ảnh 2Ngoc Tam at the 2022 KOVA Prize award ceremony in Hanoi. (Photo courtesy of Nguyen Thi Ngoc Tam)

Tam's ambition extended beyond just improving her literacy.

"Though my grandfather has passed away, I still remember his words on my first day of school - 'I only want you to be literate, nothing more. Just trust yourself, I believe in you.' Day by day, by going to school and watching my teachers, a dormant dream was reignited within me. I hoped that one day to become a teacher, helping other people, and becoming a valuable member of society," said Tam.

9 years of going to school has been a difficult journey for Tam and her family. Due to constant relocation, Tam’s condition worsened, leading to other illnesses such as heart disease, spinal deformity, pneumonia, and the extensive ingestion of medicine caused a stomach ailment.

Though Tam was forced to stop her studies after completing grade 9, her energy and dedication has never ceased.

Tam has always held fast to her life motto, "It doesn't matter how long you live, but how you live and what you leave behind."

Her unwavering dedication to this belief is why, when she was 14, she decided to open a class called “Ngoc Tam Thuy Tinh,” which means “Glass Ngoc Tam,” the nickname she calls herself.

Girl with glass bone disease evinces extraordinary willpower: Glass but not fragile - ảnh 3Tam's five no’s class. (Photo courtesy of Nguyen Thi Ngoc Tam)

Her class has five no’s: no chalk, no blackboard, no podium, no lesson plan, and no tuition fee, and has attracted hundreds of students from Nam Dinh province and elsewhere.

"In a typical classroom setting, teachers usually focus on teaching one subject to a particular age group. In my class, I teach multiple subjects to students of various ages, from grade 1 to grade 8. This presented me with a challenge: how to pair and guide all the students properly," she said.

"I had to allocate my time effectively to ensure that each student received sufficient teaching and homework corrections during every class. While there were certain difficulties along the way, I always kept in mind: As long as my heart still beats, the class will continue." 

In addition to imparting academic knowledge, Tam has also helped her students with personal life issues, serving not only as a mentor, but as a friend to the students. Despite all the challenges, Tam remains determined, fueled by the love of her students, and their high academic achievements. Many of them have been accepted into prestigious universities in Vietnam and abroad, which has strengthened her and enabled her to overcome her physical pain, Tam said.

Nguyen Quoc Phong, whose chidlren have attended Tam’s class, expressed his gratitude for Tam’s support both academically and personally.

"Despite her condition and physical appearance, Tam is a good teacher. All three of my children have been her students, and their behavior improved remarkably along with their academic performance. They achieved excellent grades every year. I really appreciate Tam’s exceptional teaching skill and feel very grateful that my children have had the opportunity to be her students."

Girl with glass bone disease evinces extraordinary willpower: Glass but not fragile - ảnh 4Tam presents gifts to members of Nam Dinh’s Disabled Youth Club. (Photo courtesy of Nguyen Thi Ngoc Tam)

Tam has not only been an enthusiastic teacher, but has also actively participated in social activities supporting disadvantaged people and inspiring the community.

"I established a reading space and a scholarship fund called Ngoc Tam Thuy Tinh. Also, I have also served as Chairman of Nam Dinh’s Disabled Youth Club, and as a member of the standing committee of the provincial Disabled People’s Association. These initiatives derived from my teaching experience, because I realized textbook knowledge is not enough for children to develop comprehensively," she said.

"The reading space has given students access to a variety of books. And the scholarship fund, at the end of each school year, awards presents to those who demonstrate good academic results to encourage them to keep up the good work."

Behind all her efforts and contributions, Tam had to contend with her own inner struggles. Juggling work, studies, and social engagements has required immense dedication and perseverance, and Tam has had to confront her own limitations and push herself beyond those limits on countless occasions.

Every single day, Tam said, she has to take medicine, as many as 20 pills a day.

"During my most excruciating moments, I question whether I can overcome the pain and whether I can continue. But my conscience urges me to keep fighting because each of us has only one life to live. I am obligated to live in a way that is fulfilling and imbue my life with purpose," said Tam.

Tam’s unwavering spirit and determination to make a positive impact is a lesson to us all that we can all make a difference, no matter how small, for the betterment of humankind.

Girl with glass bone disease evinces extraordinary willpower: Glass but not fragile - ảnh 5Tam and some beneficiaries of her scholarship fund. (Photo courtesy of Nguyen Thi Ngoc Tam)

Being born healthy is a precious gift. Not all of us are fortunate enough to have a healthy start to life. It is essential to be grateful for this gift because it can shape our lives in many ways, said Tam. 

"I believe that the young generation nowadays has an immense potential to make significant contributions to the advancement of our nation. To fulfill this potential, it’s vital that they adopt a positive attitude towards life and be prepared to face all challenges that come their way, as they are the future of our country. And to all youngsters out there, I say, please don’t forget that what doesn’t kill you makes you stronger, so never give up on your path!"

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