WESTMINSTER, California (NV) – “My five-month-old son is currently hospitalized in the emergency room at Children’s Hospital 1. Since two months, his family discovered that he has Spinal Muscular Atrophy (SMA type 1) ). Sadly, this disease is being reported by doctors as there is no cure.”
“The baby’s muscle tone gradually weakens, affecting the whole body movement and especially the very weak diaphragm will make it difficult for the baby to breathe, which will kill the baby. The family was in shock, grief and despair. But as of last night, I had little information that in the US there was Spinraza approved by the FDA as the first-line treatment for SMA. A ray of hope flashed. I’m very happy! But don’t know how to contact the organization that source this drug. I hope everyone joins hands to help save me!”
That is the plea of young mother Dang Bao Anh (32 years old, primary school teacher in Tan Binh district, Saigon) to the social networking community when her son, Cao Anh Cat, unfortunately got sick. rare genetics. And in order to save her child, this young mother is “ready to bow to the world.”
Baby has to breathe on a machine
On the evening of September 27, speaking to a reporter of Nguoi Viet daily, Ms. Bao Anh said: “This terrible disease makes Anh Cat’s body soft, weak muscles and weak swallowing, making him unable to suckle, his diaphragm also fails. Weakness makes it difficult for the baby to breathe and is very susceptible to pneumonia complications. The doctor predicts that the baby will not live past 2 years old.”
“On September 7, the baby suffered from a complication of pneumonia, respiratory failure leading to cyanosis and was about to faint, so he had to go to the emergency room at Children’s Hospital 1, Saigon. At that time, the baby’s health was declining, the doctor once informed that the baby’s lungs were very bad and the baby could stop breathing at any time. But dear, the baby still looks very awake, her eyes are like begging for help. For more than three weeks now, she has been on a ventilator in the Emergency Department for special monitoring,” she said.
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“Currently, the baby is transferred to the Resuscitation Department. Despite receiving the attention and attentive care of the department, the health situation is also complicated, the doctor makes such a prognosis because this disease will be like that. When the baby was in the Emergency Department, the pneumonia got worse, after taking antibiotics, the body responded, so the lungs also improved. For a few days now, the baby is better, fresher, but still lying on a ventilator, completely dependent on the ventilator,” she added.
Ms. Dang Bao Anh and baby Cao Anh Cat. (Image: Facebook Bao Anh Dang)
Ms. Bao Anh said that when Anh Cat was about a month old, her family saw that she had many strange symptoms, but thought it was a child’s disease, so she took care of it normally. But for a while, seeing that the disease did not change, she decided to take the baby to the hospital and the doctor diagnosed her with spinal muscular atrophy.
When learning about this disease, she cried all her tears because she knew that Anh Cat had to suffer this terrible disease. Spinal muscular atrophy is a group of genetic diseases, about 90% related to mutations in the SMN1 gene, causing damage to spinal motor neurons, causing gradual degeneration and weakness of muscles and leading to death. Currently, there is no specific treatment method, but mainly treating symptoms, preventing complications and supporting life function for patients.
“Doctors say the most effective prevention for families and couples with a history of SMA is genetic counseling and prenatal diagnosis of SMN gene mutations. This means that if there is a family history of this disease, it will only be screened during pregnancy, if not, it’s fine. But the two families do not suffer from this disease. The doctor said that the disease is directly caused by the combination of both parents carrying the recessive gene, the chance of having a baby with the disease is 25%. And my child falls into this category,” she said.
I hope you can test drugs
Having some friends and relatives in the US and Australia, Ms. Dang Bao Anh asked everyone to contact the facilities that are testing specialized drugs for SMA in the US and Australia and are waiting for their response.
“My friends translated Anh Cat’s medical records to send them everywhere for drug testing. As far as I know, there are 54 places in the world for drug testing. Children’s Hospital 1 fully supports. If the family needs anything, the hospital will support it, such as providing medical records, or somewhere to receive the baby, the hospital is ready to transfer the baby,” she said.
She said, according to the research of her family and relatives, there are two ways to save the baby. One is to find a volunteer organization to sponsor the drug or let the child participate in a drug trial in the US. Second, the family has to take the baby to the US, or Japan… for medical treatment at their own expense. Currently in the US, the cost of the drug is $125,000/shot, while the cost of the drug in Japan is $90,000/shot. During the first year, your baby needs six shots.
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“The family’s current wish is to find a charity organization, pharmaceutical company, or hospital to support the child to participate in drug trials. Because drug use is a long, lifelong process, it is not possible for the family to afford the drug due to the high cost of the drug. Currently, friends and people are still mobilizing donations to take care of the baby going abroad for treatment, but the family is not. impossible,” she confided.
Baby Cao Anh Cat with his parents. (Image: Facebook Bao Anh Dang)
She said, if there is a chance to save her child’s life, no matter how fragile, she will not give up.
“I heard that only children who are US citizens are allowed to take the experimental drug. But I begged for my son to be accepted, I am ready to bow to everyone, just waiting for him to be saved,” she said.
Doctor Pham Van Quang, head of the Department of Intensive Care – Anti-Poison, Children’s Hospital 1, said: “Because Anh Cat has severe pneumonia, he is being closely monitored. For that reason, he cannot travel by civilian plane if he wants to go to the US for medical treatment. If I can go, I have to use a private jet, but as I know, the family can’t afford it. If everyone helps her and she is healthy enough, I hope a miracle will come to her.”
To treat Anh Cat, the family needs a huge amount of money, so everyone’s help is needed. Any help for the baby, please send to account holder Dang Bao Anh, account number 58010001103715, BIDV Binh Dinh branch. The bank identification code (swift code) is BIDVVNVX580.
Ms. Bao Anh also pledged that: “In the worst case scenario, when I don’t use everyone’s donation fund for baby Anh Cat, I will make all this money public in many forms such as transferring to the association. charities or medical organizations for the research and treatment of SMA. I’m in debt to everyone, I don’t know when I’ll be able to pay it off, because the amount is too big.”
In the US, a friend of hers set up an online donation page for Cao Anh Cat at GoFundMe at www.gofundme.com/save-5-monthold-babys-life to support her medical treatment.
Currently, because she is on maternity leave for six months, every day, she and her husband, along with her biological mother, take turns on duty at the hospital to take care of the baby.
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“She’s sick right now, so I don’t know when I’ll go back to teaching,” she said.
Despite grief and despair, her Facebook page still has a lot of faith when she writes to Cao Anh Cat: “I love you so much, my little son! For many reasons, I am more disadvantaged than Mr. Hai. Sorry mom! But I know you’re a strong guy. Nothing important, right?! It is important that the child born is a gift this life gives to Hai and vice versa.”
“Because when the parents are old and one day no longer with the children, the son and Hai are always relatives and companions of each other. I love you so much, my baby brother Hai, my baby brother, Daddy!” (QUOTE)