Qianjiang Evening News, Hourly News reporter Zhang Bingqing, correspondent Zhu Yaoling
The mind is as innocent and immature as a child, but the body is aging and degenerated like an old man, when other children are still thriving When they were growing up, Kangkang (pseudonym) and Jianjian (pseudonym), who were hospitalized in Zhejiang University Children’s Hospital, were rapidly aging at a rate of 5-10 times, experiencing the pain of “aging before age”.
On the afternoon of April 22, the launching ceremony of the project “Relay for Life – Public Welfare Treatment Plan for Children with Progeria” was held in the Hubin District of the Children’s Hospital Affiliated to Zhejiang University School of Medicine.
Four year old, sixty year old body
Two years in a row Severe cerebral hemorrhage
Zhejiang University Children’s Hospital Vice President Mao Jianhua introduced that progeria is an extremely rare and fatal genetic disease, and its symptoms include severe developmental Insufficiency, scleroderma-like skin, systemic lipodystrophy, alopecia, joint contractures, skeletal dysplasia, systemic accelerated atherosclerosis, associated with decreased cardiovascular function and stroke, etc., children usually die of arterial death at around 14.5 years of age Cardiovascular events such as sclerosis have an incidence of about 1 in 8 million.
At present, there are about two or three hundred cases of children diagnosed worldwide, and only two-digit cases in China, including two cases in Zhejiang, lack of effective diagnosis and treatment plans and treatment methods.
Kangkang is from Taizhou, Zhejiang. At the age of four, he has a body in his 60s and suffered from cardiovascular and cerebrovascular diseases early. The mother told the Qian Bao Hou news reporter that his son suffered a cerebral hemorrhage for two consecutive years last year and the year before, and he was out of danger after being rescued at the Children’s Hospital of Zhejiang University. Although the child is well-behaved, sensible, and smart, he cannot go to kindergarten and can only watch helplessly at home as time leaves deep marks on him.
Child Kangkang is in the ward of Zhejiang University Children’s Hospital
Jianjian is from Yantai, Shandong Province. He is eight years old and is in the first grade of primary school. . Like other little boys, he loves toy cars, and a small car will allow him to play alone in the ward for half a day. But in school, due to his serious illness and his old appearance, which is seriously inconsistent with his age, he rarely plays with his classmates… My mother said that now the bones of his fingers are also affected, and it is much more difficult to write than others.
The child is healthy in the ward of Zhejiang University Children’s Hospital
Across the ocean, a boy named Sam is also one year old Progeria diagnosed over time. Sam’s mother, Leslie, is a researcher at Boston Children’s Hospital. In order to treat her son’s illness, she and her husband established the Progeria Research Foundation and personally participated in drug development, which was eventually successful.
But sadly, Sam died before the drug was on the market.
As a national platform construction unit, Zhejiang University Children’s Hospital established a working group for children with progeria in August 2020. So far, 5 children with progeria have been treated, all of whom have suffered serious complications, such as low body weight, Bone deformation, severe loss of independent walking ability, urgent need for drug treatment to prolong life and improve symptoms.
Deputy President Mao Jianhua introduced that the hospital has accepted free donations of drugs, which can be targeted for use in children with progeria.
Deputy Chief Physician Wang Jingjing communicates with the parents of the children
The hospital will tackle key problems and introduce a package of treatment servicesMao Jianhua said that the hospital will also explore gene therapy, NMN treatment and clinical trials to provide a package of treatment services for children with progeria.
Shu Qiang, secretary of Zhejiang University Children’s Hospital, said that when relevant research is immature and relevant policies have not yet been issued, the management department can give such strong support to children with progeria, which reflects the decision-making of the people. The concept shows that children with progeria in China are one step closer to “seeing diseases and medicines”.
Secretary Shu Qiang revealed that, as the National Children’s Health and Disease Clinical Medical Research Center and the National Children’s Regional Medical Center, the Children’s Hospital of Zhejiang University has formulated an integrated rescue service process for children with progeria, and has established a comprehensive understanding of drug sources, clinical use , risk control, scientific research, etc. to formulate regulations and plans, more children with progeria are expected to receive better treatment hope in the future.