Forty-two-year-old Pan Shu-yu (潘姝娛) has waited more than two years to see what many mothers see every day: her daughter getting out of bed and walking.
About three years ago, Chuang Pin-hsuan (莊品瑄), now 16, was a healthy student attending National Taichung Girls’ Senior High School when she suffered a sudden, unexplained paralysis to her entire body except for her eyes
She lapsed into critical condition twice, underwent five sessions of plasma exchange therapy and tried both Western and traditional Chinese medical treatments to attempt to cure her condition.
However, to the surprise of medical professionals in Greater Taichung and Taipei that had said her paralysis was probably permanent, Chuang is now able to walk and sit on her piano bench with the help of family members.
The girl’s miraculous recovery has not only lifted a tremendous weight off her mother’s shoulders, but also offered a glimmer of hope to the tens of thousands of families in Taiwan dealing with rare or undiagnosed conditions.
Looking back to when she traveled the nation in a desperate quest for information and possible cures for her daughter’s condition, Pan said: “We have no way of foretelling when a healthy person may fall ill, nobody does. When this occurs, it is a test from God and we do not have the right to be pessimistic.”
Pan said Chuang’s sickness started off with minor symptoms such as stomachaches and diarrhea in November 2011, when she suffered a bout of flu. After she began experiencing weakness in her limbs a few days later, she was taken to a local hospital, Pan said.
However, doctors were unable to determine the cause of Chuang’s symptoms and only could only suggest that they might have been triggered by viral attacks on her nervous system, Pan said.
Shortly after being admitted to hospital, the paralysis affected Chuang’s feet before gradually spreading to her upper body and then to her hands and by March last year, she was completely immobile, Pan said.
So that she could concentrate on being a full-time caregiver for her daughter and take her to see doctors, Pan resigned from her job as a radiologist, a profession she had followed for the past 12 years.
Despite her mother’s attentive care, Chuang’s condition worsened a few months later and she began experiencing partial and whole-body convulsions.
“During that time, my daughter could have up to eight seizures a day. Seeing her paralyzed in bed, and having difficulty breathing, with her body convulsing was like having needles pierce my skin,” Pan said.
Pan said the most difficult decision she had to make during her daughter’s illness was when the doctors said Chuang should have a tracheostomy to help her breathe and asked Pan to signed a consent form for the procedure.
“For some reason, I just believed that my daughter would pull through [without the procedure], though she could not speak to tell me that at the time,” Pan said.
“However, as I struggled with whether to sign the consent form... I saw my daughter trying to tell me with her eyes that she would get through this,” Pan said.
Pan said her daughter’s road to recovery was like “a driver entering a tunnel they cannot see any light at the end of,” adding that although she consulted doctors at five different medical facilities over the past two years, none were able to pinpoint the causes of Chuang’s illness.
Adding to the family’s woes, Chuang’s condition was not on the list of 197 rare diseases covered by the National Health Insurance, meaning that all her medical expenses, including hospitalization costs and plasma exchange fees, had to come out of Pan’s savings and her husband’s salary as a police officer.
“Thank God my daughter recuperated this year, otherwise we would have had to sell our house to pay for her treatment,” Pan said.
Pan said Chuang took a turn for the better in October last year, one month after taking medicine prescribed by a traditional Chinese medicine doctor, surnamed Li (黎).
“She gradually began to regain her vitality and could swipe her fingers very slowly across a touchscreen. It was not long before she could ‘like’ her friends’ Facebook posts using a tablet PC,” Pan said.
Once it was apparent that her condition was improving, Chuang was transferred to Taichung Hospital, where she underwent plasma exchange therapy once every three months and received routine injections of immunoglobulin to help boost her immune system, Pan said.
Pan said she was never completely sure that Chuang would be able to beat her illness until earlier this year, when for the first time in more than two years, her daughter was able to sit up in bed.
“At that moment, I told my daughter that even if the whole world were to give up on her, we would always be there for her,” Pan said, adding that God had given them hope when they had no one left to turn to.
“No one could have predicted the outcome of us spending all that money to try and save our daughter. However, we were sure of one thing: That we would regret it for the rest of our lives if we gave up on her without trying everything we could,” Pan said.