Scoliosis with Rare Disease Patient Receives Aids from the Charity within 15 Days and Completed the Surgery in 13 days
I thought I was forever going to have an ugly hunched back.
Because of poverty, I could not afford the surgical cost.
I never thought of having a straight back.
However, something changed in 15 days later.
Hello, my name is Mao Mao and I am 14 years old. Since I was little, I was diagnosed with Neuromuscular scoliosis. On top of this disease, I was also diagnosed with Segewa syndrome.
My scoliosis degree was 100˚ and my kyphosis angle was 92˚. Hence, there was a big disturbing lump on my back. As I grew older, the pain from scoliosis became worse. If I sat for a very long time, my back would hurt and develop breathing difficulties.
To make things worse, Segewa syndrome increased muscle tone and decreased muscle strength, I was unable to stand and walk and could only sit on a wheelchair.
I had a wish. The wish was to one day be able to walk properly and run freely, under the sun, with my friends.
Up until my encounter with Professor Yang, this wish did not come true.
Process of applying aids
Submitted the application by February 24th, 2020
Application approved by March 10th, 2020
Admitted to hospital by March 19th, 2020
Finished the sugery by March 26th, 2020
discharged from hospital by April 8th, 2020
I came to Xinhua Hospital affiliated to Shanghai Jiao Tong University to find Professor Yang Jun Lin. After the consultation with Professor Yang, he told me that my disease could be treated by surgery. At that moment, I felt like I had hope for a change.
February 24th, 2020
When I was notified by the expensive cost for the surgical, my hope perished again. I did not come from a wealthy background, nor could my parents afford this surgery. Even if they worked around the clock, they still would not be able to afford the surgical cost.
Professor Yang suggested that I apply for aids at X-in Miao Charity Fund and let the staff (at the charity) provide assistance with the application process.
March 10th, 2020
I have received answers from X-in Miao Charity fund saying they will provide (in RMB) 30 000 to 50 000 of aids.
After receiving this news, my family and I were delighted. I could not believe I was receiving aids two weeks after application. Along with healthcare and my parent’s funds I was able to afford this surgery!
During the application process, I discovered that this charity fund helps raise aids for patients who cannot afford their medical treatments. Applicants will be reviewed by the charity’s experts and successful applicants will be assisted by Mr. Xu, a staff at X-in Miao Charity, who will help communicate with the Social Work Departments at the hospital. I knew that my aids came from Xinhua Hospital’s Pu-Ai Sunshine Funds. The total granted fund was 50 000 RMB.
March 19th, 2020
I arrived at Xinhua Hospital affiliated to Shanghai Jiao Tong University and prepared for my surgery.
To ensure the safeness of this surgery, Professor Yang teams up with experts from the MDT team of the spine center, clinical genetic center, anesthesiology department, pediatric ICU, pediatric operating room, pediatric respiratory department, neurology department, and rehabilitation department of Xinhua Hospital. They planned out an intricate surgical plan to ensure the process will not worsen my segewa syndrome and how I will recover from the surgery because of my congenital illness.
March 26th, 2020
Professor Yang and his team have completed the surgery and I entered the ICU for two days to be safe. I ate normally, my breathing and muscle strength of both lower limbs have improved compared to before.
April 8th, 2020
I have officially discharged from the hospital!
I would like to thank my parents for not giving up on finding a treatment for me. It took us 15 days from consultation to receiving aids and another 13 days from surgery to recovery!
I saw a straightened back in 13 days. To me, this is a dream come true.
Lastly, I would like to thank Professor Yang and X-in Miao Charity.