Grandfather Becomes Pillar for Boy Battling SMA for 9 Years

A 9-year-old boy with spinal muscular atrophy has survived years beyond an early prognosis after his grandfather stepped in as a full-time caregiver, helping with rehabilitation, hospital routines and school life in Nanjiang, capital city of Jiangsu Province, Jiangsu Television Station has reported.

Cao Jingyan was diagnosed with SMA when he was 6 months old. His mother, Zhu Wei, said doctors initially told the family the child might have only 18 months to live. The diagnosis left the family devastated, but Zhu's father, Zhu Yunchang, decided to travel to Nanjing the next day to help care for his grandson.

SMA is a rare genetic neuromuscular disease that weakens muscles by affecting motor neurons. Infantile-onset SMA is among the leading genetic causes of infant mortality, according to medical literature. In Cao's case, daily care has involved rehabilitation exercises, massage and close attention to breathing and physical comfort.

Zhu Yunchang said he learned rehabilitation techniques by asking other parents at a children's hospital to let him watch and follow their routines. After learning the exercises, he performed them for his grandson every day. Even when he was ill, he wore a mask and continued massaging the boy, the report said.

In 2019, nusinersen, sold as Spinraza, became available in China as a treatment for SMA. The drug cost nearly 700,000 yuan (US$96,000) per dose at the time, placing it far beyond the reach of many families. Zhu Wei sold their wedding apartment and borrowed money from relatives to pay for her son's first injection.

Zhu Yunchang recalled that his daughter's hands trembled as she tried to pay the hospital bill. He said he held her hand and pushed the bank card toward the payment window himself.

To raise money for treatment and daily rehabilitation, Zhu Wei worked during the day and sold goods through livestreaming at night. Worried that his daughter was barely sleeping, Zhu Yunchang eventually took over the livestreaming work himself, even though he had little experience with online sales.

The financial pressure eased in late 2021, when nusinersen was included in China's national medical insurance system after price negotiations. The listed price fell to about 33,000 yuan per dose, according to public reports at the time. Cao's condition has since been largely stabilized by medication, though he still requires long-term hospital treatment and continuing rehabilitation.

Zhu Yunchang has also tried to help the boy stay connected with children his own age. On days when Cao can leave the hospital, his grandfather takes him to school. Because Cao cannot fully control his arms, Zhu Yunchang sits nearby to help him turn pages, write, erase and adjust his position.

His teacher Zhang Tian said Cao insists on finishing two main classes before going to rest, even though sitting through lessons is physically tiring for him. The school has set aside a room where he can rest and receive massage after class.

Zhu Yunchang said the visits to school matter because they allow Cao to experience friendship and ordinary childhood moments. Some classmates help push his wheelchair, share snacks with him or shield him from rain with their own clothes, he said.

The report didn't mention where the boy's father was or his role in the family.

Now in his 60s, Zhu Yunchang said he is also trying to support his daughter, who is only 40 but has seen much of her hair turn gray under the pressure of caring for her child. 'While I can still move, I will help as much as I can,' he said in the report.

For Zhu Wei, her father has become the family's main source of strength. She described him as someone who protects the family and keeps giving them energy. Zhu Yunchang, however, said his wish is simple: He does not want flowers or gifts, only for his daughter to be happy every day.