- A rare hereditary disease called Menke’s syndrome
- A three-year-old child who has been ill since birth
- The drug was not available anywhere in the country to treat the child
- Due to Kovid’s restrictions, he was not allowed to travel abroad
- A father who studied for himself and prepared medicine at home
The story is about a father who saved his two-year-old child from a rare and dangerous disease. Well, this has happened in China. Xu Wei’s two-year-old child, Huoyang, who lives in Kunming, China’s Yunnan Province, has been living for several months. The only drug to overcome a rare genetic health problem was not available in any corner of China. It was a time when the corona virus was at its peak. The borders of most countries, including China, were closed to foreigners. Thus there was a state of non-alienation for treatment.
Xu Wei did not cry out in despair that she could not save the child’s life. Instead they made their home a laboratory. He embarked on a drug-finding adventure for his son.
Haiyong had the disease Menkes. Menkes syndrome is a rare congenital syndrome. It helps to reduce the amount of copper that is important for the brain and nervous system in children. If the child is born with this disease, the chances of surviving more than three years are rare.
But Xu Wei did not get upset. ‘I didn’t even have time to think about whether I should really do it or not. It had to be done, ‘Xu, 30, said.
So, Xu’s reading is just eighth grade. He runs a small online business and is fighting for everything he can to cure his son. ‘He cannot move and cannot speak. But he has soul and feelings. ‘ Frequently the son sleeps on his lap and drinks water mixed with honey.
Opposition from home
Knowing that the disease is impossible to cure and that there is no single drug available to alleviate its symptoms in China, he immediately began research. He began to study pharmacology by using his intelligence. But his family and friends were hostile to him.
Study using translation
Information on Menkes syndrome was online in the English language. Xu, who had not read much, studied them using translation software. He later built a lab in his father’s gym. After learning that copper histidine could be used as a remedy, he mixed histidine with copper chloride dehydrate, sodium hydroxide and water.
He started giving his own homemade medicine to his son every day. This has led to an increase in the amount of copper that is lacking in the baby. Two weeks after the start of treatment, a blood test report showed normal. This child is unable to speak. But Father’s tender hand laughed a little at the head.
Hardship from Kovid
The information and records about the disease are scant. Also, the drug was not interested in the treatment because its treatment had no commercial value and the number of users was very low. If that were the case, they would be willing to go to specialist centers abroad and treat the child. But due to Kovid 19, China has strictly closed its borders. There was no choice but to do something for themselves.
‘It sounded funny to me when I first heard it. Xu’s father, Xu Jianhong, thought it was impossible for him to do it.
Attempt on rabbits
After six weeks of trying, Copper produced a bottle of histidine. It was first tried on rabbits. He then added them to his own body. The rabbits were healthy. I was worried. Thus began an experiment on the son. Xu said the dosage was increased step by step as there were no side effects in the baby. But this drug cannot cure the disease.
Copper therapy can only help alleviate some genetic problems if given early in the first trimester of childbirth. Professor Anik Toutane, a rare disease specialist at the University of Tours in France, said the treatment could reduce symptoms and not cure recovery. Xu also acknowledges that Vina does not cure unless it reduces the disease.
Demand from other parents
Xu’s experiment has shown interest in the international biotech lab vector builder. Now it is starting gene therapy research with Xu for Menkes syndrome. Bruce Lahn, the company’s chief scientist, said he was impressed with Xu’s family, saying it was a rare disease.
Parents of other children confirmed by Menkes have also contacted Xu and requested to treat their children. But Xu has refused. ‘I can only be held responsible for my child’s life,’ he said. Xu’s trial has not been hampered by the authorities. Officials said they would not interfere even if they were making medicine for themselves at home.