▎ WuXi AppTec content team editor
Dad once had a dream that you would grow up to be a guitar player and pluck the strings to make the notes beat happily.
Now, Dad just wants to wave the magic wand for you every day, hoping to help you drive away the disease and protect your healthy growth.
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From 2011, when his son came like a little angel in the expectations of the whole family, to a diagnosis of "mucopolysaccharide storage disease type II", the past 10 years have been a difficult and tortuous experience for musician Qian Yifeng.
One in a hundred thousand by chance
Yi Feng is an original music creator who has composed many popular songs, and he has helped his children plan their future music path before they are born.
But the abnormal posture of "inverted feet" when his son was born made Yi Feng's head "buzz". Less than an hour after birth, this little life was admitted to the intensive care unit due to breathing difficulties, and stayed for a month, leaving the worried family in a panic.
Unfortunately, it didn't stop there. At the age of two, my son still couldn't walk; until he was six, his hands, elbows, and knee joints still couldn't be straightened, and he couldn't complete the simple daily movements of getting dressed.
In order to be able to diagnose what kind of disease his son had, Yifeng went to a number of medical institutions. Doctors at major hospitals intuitively felt that the child was not quite right, but they could not say exactly what was wrong, and there was no abnormality in routine examination.
In the end, experts from Shandong Provincial Hospital cleared the fog for him. The expert said at the first sight of the child, "This child looks like a mucopolysaccharide (storage disease) from the face", and under the advice of the doctor, Yifeng took the child to undergo a bone examination, genetic testing and enzyme testing.
The results of the "mucopolysaccharide storage disease type II" on the diagnostic report turned Yifeng's entire world gray. At that time, he already knew that the incidence of this disease in China was about one in 100,000, it was almost difficult to cure, and the time he could accompany his son might only be just over a dozen years...
▲Yifeng and his son (Image source: Banknote Yifeng)
Growing "sticky baby"
Mucopolysaccharide storage disease is a congenital genetic metabolic disease, due to the lack of specific enzymes in the body, patients will have developmental delays, short stature, so it is also called "sticky baby".
The number of pediatricians familiar with mucopolysaccharide storage disease is very small, so the misdiagnosis rate of this disease is high and difficult to diagnose, and patients often go to multiple departments but cannot find the cause. In addition, this "rare disease in rare diseases" is difficult to cure, and the current treatment of mucopolysaccharide storage disease type II mainly considers enzyme replacement therapy, directly supplementing the missing enzymes in the patient, or taking symptomatic treatment strategies to delay the progression of the disease.
Is it to stick to treatment or to give up? Parents of many children with rare diseases face such cruel choices. "Don't give up! As long as you insist on finding a cure, there will always be a day when the willow is dark. "Yifeng is so convinced, and even more so practicing.
Magic wand in the time machine
As his condition worsened, Yi Feng's son developed a middle ear effusion, and the hearing in one ear had completely disappeared, and the other ear currently had only weak hearing and could only attend a special education school. Now, Yi Feng no longer has the luxury of asking his son to embark on the road of music, but only hopes that he will grow up happily every day and be free from the torment of illness.
▲May the magic wand of love drive away the disease (Image source: Qian Yifeng)
Once drunk, Yi Feng confided in his friends: I really hope to have a time machine, don't let the child come, suffer this sin... After waking up drunk, he composed this song for all "sticky babies" - "Sticky Baby's Magic Wand". He hopes that more people will know about mucopolysaccharide storage disease and pay attention to the "sticky baby" group.
"You use your magic wand to direct me to smile, and you use your magic wand to mobilize my hope for life."
I am your magic wand, love is the energy that demons fear, and I am your magic wand, accompanying you to draw rainbows and sunshine. ”
China's "sticky baby" group is about 3,000 people. At the Beijing Zhengyu Mucopolysaccharide Rare Disease Care Center, many "sticky baby" families gather here, and they go all out to improve social awareness and improve the quality of life of "sticky baby" to help more patients race against the disease. The "magic wand" of combined forces allows love to be condensed and transmitted, and the voice of the "sticky baby" family becomes more powerful.
On the stage of the 2022 Rare Disease Day Charity Concert, Yifeng will sing this touching song "Sticky Baby's Magic Wand", using this "magic wand of love" to bring warmth to more people.