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Spinal Muscular Atrophy (SMA) is a life-threatening genetic disorder The Hong Kong University's teenage girl, Zhou Peishan, who suffered from spinal muscular atrophy (SMA) l 39; last year, personally drafted a four-month plan to recommend new drugs to the government. After consulting the pharmaceutical industry, the new drug was introduced in Hong Kong in March this year. The Charity Fund for Spinal Muscular Atrophy currently has 86 patients, 8 of whom have been badessed and started taking medications, including Marcus, 7 years old.
Zhou Peishan, a girl from the University of Hong Kong who suffers from spinal muscular atrophy (SMA). (photo by Liang Weirong)
Marcus and his mother. (Photo by Liang Weirong)
After Marcus was diagnosed with the first type of ADM at the age of one and a half, the ventilator, cough and wheelchair were inseparable from him, and the members were more vulnerable. In order to improve the condition of his son, mother Marcus learns from time to time Chinese medicine, acupuncture, mbadage, etc., hoping that the state of his son does not do not go to bad. After being evaluated by the hospital, Marcus started using the new drug "SPINRAZA" for free in May 2007. Six injections were given in the first year, followed by four injections a year and three injections.
Marcus' mother described that when the son did not receive a cure, whenever there was insufficient respiration, the blood oxygen content and heart rate decreased and the condition improved after treatment: [19659006] After use, the muscles and hands and feet of the mouth are more flexible, and you can also eat your own spoon.The daily use of the fan is reduced from 14 hours to 8 to 10 hours.
Marcus also said that he can eat more food, feel happy, and suddenly now, he likes to eat wonton.
Marcus and his mother. (Photo: Liang Weirong)
Although she dares not expect much of the full recovery of her son, she knows that her son loves Doraemon, Superman and Transformers and other characters from drawings animated, and think that Japan will travel with Legoland in the hope of staying. When his health stabilized, the family flew to Japan. She said:
I do not expect my son to know and run, but as long as he sees his condition progress, it will not get worse, I will be satisfied.
On Mother's Day, she sent an email to General Manager Lin Zhengyue to tell her about her son's treatment with new drugs and quoted the response from the other party.
Anzai, age 22, was diagnosed with the second type of ADM at the age of 2, and since her parents had been divorced for a long time, Anzai and her three siblings were dependent on their mother. Affected by the disease, Anzai's lungs are more repetitive, the muscles are weak and weak, the lower limbs can not be limited, and they need to rely on wheelchair and exercise activities. Use fans.
Yang Zhaoan and his mother. (Photo by Liang Weirong)
Anzai's daily life depends on the kitchen of the mother To prevent her son from inadvertently choking while sleeping, Anzai's mother must l & # 39; 39 to help from time to time and she has not slept in a long time. Suffering from bad cancer and blood cancer, although the condition has stabilized, but the physical strength is not as good as before, now rely on the Indian servant to help. And Anzai now regularly receives home rehabilitation physiotherapy services to stabilize the body. In addition, the FSMA was established this year for the 20th anniversary of the book, and published a new book entitled "Love Life and Unlimited" at the book fair, which included 12 stories of patients with spinal muscular atrophy.
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