Story of Chen Min and Her Son, “Little Ocean”
Chen Min tells the story of her realization that her son, “Little Ocean,” had epilepsy, and how the Rainbow Bridge program has helped him and his family.
Rainbow Bridge, Hope and Care for Children with Epilepsy, is a project jointly sponsored by Project HOPE, the China Association Against Epilepsy, UCB and CCNS. Here, Chen Min tells the story of her realization that her son, “Little Ocean,” had epilepsy, and how the Rainbow Bridge program has helped him and his family.
Our boy is now 10 years old. The first three years of our family life were filled with endless joy and happiness.
On October 16, 2008, misfortune happened as I found our “Little Ocean” with his lips twitching, his hands rhythmical shaking, his eyes turned up. After one night at the hospital, happiness and sadness had changed places in our heart. Our boy turned his head away, was angry and I was anxious and helpless. The doctor explained the seizures, and I was petrified and irritated.
The doctor at the Wuhan Children’s Hospital of Neurology brought back peace. He helped our Little Ocean with drugs to treat his ongoing grand mal seizures. When I looked online, I learned about the ill-effects of long term medication. However, the doctor reassured us that the possible damage caused by the drugs is much smaller when compared to the disease.
Five years after the initial diagnosis and treatment, our Little Ocean – then 8 years old – developed new symptoms: blinking of the eyes, head falling away, tremors, salivation and slurred speech. The new diagnosis was labeled “electrical status epilepticus during slow-wave sleep” (ESESS), and we applied the ketogenic diet treatment. Ketogenic treatment is a treatment of pain – if your child has a fit, parents should persist. The starving at the start made me powerless. My tears were flowing long rivers. After five months we changed to a hormone treatment.
The road to a happy life for our Little Ocean is long and hard, we know. Although we are often tired, my mind is filled with the lyrics: “whether life has given me endless pain and torture, I still feel more happy.”
I am grateful to the doctors of the Wuhan Children’s Hospital, the medical staff, the drivers taking us to the hospital, my family and my husband – and to our Little Ocean. Life is not easy, but I enjoy the rainbow after every storm.