Even though the chances are slim, the mother in Ho Chi Minh City still did not give up in her journey to find a medicine with a price of millions of dollars – the most expensive in the world – to save the life of her young son with a rare disease.
That mother is Ms. Thai Thi Truc Quynh (36 years old, living in Binh Thanh District, Ho Chi Minh City ), day and night dreaming about the chance of life for her son Huynh Ba Minh Vuong (3 years old, commonly known as Zin) who has the disease. spinal muscular atrophy
The day I learned that my child was sick, my mother’s world collapsed…
The beautiful love of Ms. Truc Quynh and her husband, Mr. Huynh Ba Huy (36 years old) had a perfect ending with their wedding at the end of 2019.
In early 2021, baby Zin was born in the joy and happiness of the newlywed couple, because their love also bore sweet fruit.
At 10 months old, Zin was diagnosed with SMA.
Thinking that the happy life of the small family would continue peacefully forever, then an incident suddenly occurred. Ms. Quynh still remembers clearly that in November 2021, she was shocked to hold the doctor’s conclusion in her hand, confirming that her first son had spinal muscular atrophy. At that time, Zin was only 10 months old.
Many months ago, the baby showed strange signs when he refused to turn over or lift his head when lying on his stomach, even though before that, he did this very well. However, because of the Covid-19 epidemic, she was only able to go see a doctor for her child.
“When I heard the news, I was shocked, dumbfounded, tears just kept flowing and flowing. I don’t know how or what words to use to describe my feelings at that time. I don’t know what this disease is like, I only know that it is a rare disease, the incidence is about 1/11,000 births and the child’s chance of living normally is very low. My husband, who is usually calm, quiet, and rarely shows emotions, that day, he also cried because he loved his child,” she recounted her horrified feelings.
Ms. Quynh quit her job and accompanied her son.A mother in Ho Chi Minh City “asks” for help on her journey to find the world’s most expensive medicine to save her child.
Many times, she painfully asked herself: “Why is it my child?”, “Is life so unfair to Zin?”… After the initial broken emotions, they also implicitly understood that The fight to regain a normal life for your child also begins here.
She called the company where she had worked for more than 10 years to ask for leave to start her journey with her child. The mother said that luckily, at that time, the company sympathized and allowed her to work at home and take care of her child.
Her job lasted for 6 months, then she decided to stop completely to devote full time to her children. As for him, he still tries his best to work to have income to cover his life and fund treatment for his children.
The mother said that since the day she discovered the disease, her child’s health has not been good and the situation has gotten worse, so she had to be hospitalized many times for treatment.
According to the doctor, treatment for SMA babies is mainly physical therapy and rehabilitation to prolong the baby’s life. Because this is a neurodegenerative disease, there is no specific treatment solution. .
Zin’s spinal muscular atrophy affects his movement, eating, and he does not have a normal life like other children.
CAO AN BIEN
“There are currently 3 drugs in circulation in the world to treat spinal muscular atrophy. The drug Zolgensma can target this disease. But this drug is considered one of the most expensive drugs in the world, each dose can cost about 2.1 million USD (equivalent to about 50 billion Vietnamese Dong – PV).
The above medicine is also considered the dream of many families with children with spinal muscular atrophy and the only way we can save their child’s life is to hope that their child can improve their mobility, be able to sit and do activities. Eat and drink like you guys,” the mother said.
What is SMA?
Spinal muscular atrophy, scientifically known as Spinal Muscular Atrophy (SMA), is a genetic muscle atrophy caused by motor neurons that control the behavior of the spinal cord. The number of people with the disease is quite rare, with the incidence rate in newborns being 1/10,000 and the rate of people carrying the disease gene in their bodies being 1/150. Among them, spinal atrophy mainly affects young children and infants.
The cause of SMA is a mutation in the SMN (survival monitor neuron) gene on chromosome 5 (5q13). The SMN gene regulates the synthesis of the 294 amino acid long SMN protein present mainly in spinal motor neurons. Mutations in the SMN gene cause motor neurons in the spinal cord and brain to not function.
Currently, the main method is to treat symptoms, prevent complications and support life functions for patients. Scientists around the world are still researching and testing specific treatment methods, including gene treatment methods. (Source Tu Du Hospital)
“The chance is slim, but Zin, parents, don’t give up!”
To find a life for their child, the couple registered for free drug aid programs for this drug in Vietnam as well as around the world. However, luck did not smile on Zin and his parents.
“I did some research and found out that each year the program only gives 100 free doses of Zolgensma to children globally, so not every child “wins the lottery”. There are parents I know whose children have SMA who received this medicine, their health and movement improved very well after taking the medicine, but my children are not so lucky, I am also sad and pity Zin,” she said. show.
Not giving up, the mother decided to organize a fundraising campaign, “asking” everyone to help Zin to have enough money to buy this medicine. Because this medicine is not available in Vietnam, she researched and contacted the doctor. Many hospitals around the world and know that a hospital in Dubai is willing to treat SMA children with this medicine at the most “bargain” price, about 1.8 million USD (nearly 45 billion VND in Vietnam – PV).
Mr. Ba Huy, Zin’s father, said that there is no fear greater than the fear of losing your child, no pain greater than the pain of thinking about your child’s uncertain future if not treated. That is the reason why the couple never gave up, did not give up any opportunity for their child, even if it was a fragile hope.
Every day, Zin is carefully cared for by her parents and grandparents, and receives physical therapy and medication to maintain her health condition from getting worse. Ms. Le Thi Thanh Nguyen (61 years old), Zin’s grandmother, said that when she heard that she had a rare disease, she was extremely shocked and hurt. But she also remained calm and encouraged her children to find a way to save their grandchildren as well as accompany them on the journey of care and nurturing.
The boy was well cared for by his family.
Looking at her handsome son, chattering away, she confided that now, even if she sold all the assets she and her husband had, they would still have accumulated 5 billion VND. This number is far less than the dose of medicine that saves a child’s life.
“I believe that every life is precious and worth living. As long as you believe that your small contribution will save a life, please help Zin,” the mother reminded.
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