Ms. Q. is doing physical therapy for her child - Photo: Family provided
"When I found out my child had a rare disease, I was completely devastated. Even in my sleep, I can't forget this pain" - Ms. PTNN (33 years old, living in District 12, Ho Chi Minh City) recounted the most painful moments of her life.
Ms. TTTQ is raising funds to save her 3-year-old son.
Will take care of you as long as you are here
During the 9 months and 10 days of pregnancy, Ms. N.'s health and the fetus were completely normal.
When her daughter was born, she was normal like any other newborn. However, after only 3 days of age, her breathing became abnormally weak. Doctors suspected that she had pneumonia or a metabolic disorder, so they transferred her to Children's Hospital 1 for emergency care.
Here, the doctor tested the baby and diagnosed him with a protein metabolism disorder.
"When I first had a child, I had never heard of this disease. At first, I thought it was like a digestive disorder. Then I started searching online. The more I read, the more depressed I felt!", Ms. N. recounted.
Ms. N.'s child was discharged from the hospital after nearly 2 months of treatment. From the time of discharge until 17 months old, her child developed almost like a normal child. At this time, Ms. N. and her husband had a lot of hope.
She said, "My child has a rare and serious disease, but if I take good care of him, he can still develop, just slower than other children of the same age."
At 17 months old, the baby already knew how to hold onto hands to stand up, said his first adorable words "daddy...daddy" and even started to grow some teeth. However, at this time when his parents had high hopes, the baby had an "acute seizure" - a life-threatening condition.
My parents took me to Children's Hospital 1 for emergency treatment, but I had brain damage. The day I was discharged, I was like a completely different child.
I couldn't sit or walk anymore. I just lay down and cried. I couldn't sleep at night either, I was startled all the time, I had to take more sedatives. From that time on, I was hospitalized and discharged continuously.
Her child's health is not good, so Ms. N. has to spend more and more time taking care of her child. Now she has quit her job to stay home and take care of her child. Her husband takes care of the family's finances.
Your child's diet must be prepared according to the instructions of the nutrition department of Children's Hospital 1. Vegetables, meat, and fish must be weighed accurately to see how many grams before preparing food for your child.
Because her child eats through a tube that goes through her nostrils and straight into her stomach, after preparing the food, Ms. N. has to grind the food and feed it through the tube.
Not being able to speak a word, the child communicates with his parents through his eyes, facial expressions, and smiles. After taking care of the child for nearly 3 years, Ms. N. has understood what the child wants, whether he is happy or sad... Every time she sees the child smiling, looking lovingly at his mother, she feels happy with the child.
Over time, Ms. N. accepted this truth and she determined to be her child's strong support until the day her child was still with her.
Ms. N.'s daughter (wearing a red bow on her head) was held by Dr. Nguyen Thi Thanh Huong - Deputy Director of Children's Hospital 1 - on the rare disease day recently held at Children's Hospital 1 - Photo: THUY DUONG
Two children with rare disease
"I gave birth to my first daughter in 2009 and only 3 years later she passed away. At that time, the doctor could not find out what was wrong with my daughter" - Ms. PTP (49 years old, living in District 1, Ho Chi Minh City) said.
Two years later, a baby boy was born with the same symptoms as her. At birth, Ms. P.'s son was still healthy and normal, but on the fifth day he started to show signs of lethargy and milk poisoning.
Ms. P. took the baby to a children's hospital in the city for examination, the doctor said everything was fine. Two days later, she took the baby back to the hospital for examination again. This time, the doctor admitted the baby to the neonatal department. The doctor examined and did blood tests but still found nothing unusual.
That afternoon, the baby stopped breathing, the doctors had to give him emergency treatment, then he was discharged from the hospital. The next time he had to be admitted to the neurology department...
Because her second child had the same symptoms as her first, Ms. P. was always very worried. She went online to read articles about diseases in newborns.
She read that a doctor at the National Children's Hospital in Hanoi had treated a child with a rare disease with symptoms identical to her child's, so she contacted the doctor and flew to Hanoi the next day.
At this time, her child was 7 months old. Although she had not done any tests, just looking at her child's face and hearing the symptoms, the doctor said that 90% of her child had a protein metabolism disorder.
Her child's test sample had to be sent to France. The test results showed that her child had the disease as the doctor had previously predicted.
After many days of worrying about her son's illness, now that her son's illness has been diagnosed, Ms. P. feels mixed emotions. Happy because her son's illness has been diagnosed, but sad because her son has this rare disease.
Since then, her family has followed the doctors' treatment regimen. Later, her child received treatment at Children's Hospital 1.
Ms. P.'s 11-year-old son was held by his father on the rare disease day recently held at Children's Hospital 1 - Photo: THUY DUONG
Never stop hoping to save your child
That is Ms. TTTQ (36 years old, living in Binh Thanh District, Ho Chi Minh City). Ms. Q. is raising funds herself in the hope of finding a chance for her son to live.
Her son, HBMV, 3 years old, has spinal muscular atrophy.
Previously, like other children with this disease, baby V. refused to roll over or lift his head when lying on his stomach. Ms. Q. took her child to the doctor and was diagnosed with spinal muscular atrophy. At that time, her son was 10 months old.
"I still remember clearly the day I received my child's test results. I could only cry and almost collapse when the doctor said that there was currently no cure for my child's illness in Vietnam, my child might not live past the age of 2 or if he did, he would never be able to walk again," said Ms. Q.
Ms. Q. and her husband have searched for many programs as well as organizations and hospitals in and outside the country in the hope that their child can access medicine and treatment as soon as possible.
Hope seemed to smile when my child was selected to participate in the lottery program to sponsor the American drug Zolgensma (worth 2 million USD, equivalent to 50 billion VND), but after more than a year of waiting, no miracle has come to my child.
On her child's second birthday, Ms. Q. received notice that her child was removed from the program because it was only for children under two years old.
"All hope seemed to collapse, my heart ached when I saw the process that my little child had fought for over the past 2 years. But if my child was so resilient, why would a mother like me give up?", Ms. Q. emotionally shared.
Hope was once again opened when Ms. Q. received information that the drug Zolgensma had been approved to treat children with spinal muscular atrophy over 2 years old in the US and some European countries also approved it for children with weight within regulations.
She contacted a hospital in Dubai and was confirmed that the hospital accepts treatment for children over 2 years old weighing less than 21kg.
"I was like a drowning person who received a life preserver in the middle of the ocean. I wanted to save my child! I never stopped hoping to save my child...".
In Vietnam, there are 100 rare diseases recorded with 6 million people suffering from the disease, of which 58% appear in children. And certainly nothing can measure the love and hope of motherly love in mothers who are taking care of children with rare diseases like Ms. N., Ms. P., Ms. Q...
Ms. PTP shared that her child is now 11 years old, but she and her husband always have to take care of him like a 2-3 month old baby. There must always be someone with the child 24/7, even when sleeping.
When sleeping, children often get startled, so parents have to be there to hold their hands.
"However, my child really likes to be taken out by his parents. As soon as he knows he's about to go out, he'll lift his head and raise his arms. Every night my husband and I take turns taking him out for a walk so he can see the supermarket and the streets," said Ms. P.
Source
Comment (0)