7-Year-Old Odisha Girl Battling Rare Disease Syringomyelia; Family Seeks Govt Help

Bhubaneswar: She is barely seven-year-old. But Manvi had to spend more than three years in different hospitals of Odisha to get treatment for a rare disease, which she got during Covid 19 pandemic.

Her family has been joggling from one hospital to other to get her cured spending lakhs of rupees. The medical bills continue to mount and the family has turned bankrupt. There is neither any end to the treatment procedure, nor any guarantee that the child can fully recover.

This is bitter reality for Manvi from Odisha’s Ganjam district. Her mother Rohini Achari has been jostling from one hospital to other in Berhampur and Bhubaneswar, without much success to get her daughter cured.

Initially Manvi suffered from minor cough and cold during Corona outbreak in 2021. She was rushed to MKCG Medical College and Hospital in Berhampur. Since there was no improvement, Manvi was referred to Ail India Institute of Medical Sciences (AIIMS) Bhubaneswar. But dearth of bed in AIIMS Bhubaneswar, compelled Manvi’s parents to get her admitted to a private hospital in Bhubaneswar for better treatment.

During treatment, her health deteriorated further. The expenses crossed more than Rs nine lakhs. The family raised seven lakhs from relatives and acquaintances. But that was insufficient. Considering the family’s financial struggle and Manvi’s health conditions, an NGO offered Rs two lakh assistance.

Unable to raise further funds to meet the soaring medical expenses, Manvi’s family returned to Berhampur and got her readmitted to MKCG Medical College and Hospital. She was temporarily cured and discharged from the hospital.

After months of normalcy, Manvi fell ill again and was rushed to MKCG Medical again recently. But what is the disease? Why is Manvi forced to undergo treatment time and again?

As per medical reports, Manvi is suffering from a rare disease Syringomyelia. In case of a patient suffering from Syringomyelia, there is development of a fluid-filled cyst within the spinal cord. The cyst, which is sometimes called a syrinx, can grow larger over time. When it does, it can damage the spinal cord and cause pain, weakness and stiffness.

In case of such a disease, the symptoms vary from one person to the other, depending on the severity and location of the cyst, and the underlying cause. Symptoms can develop slowly and that may delay the diagnosis. Symptoms include pain and weakness in the back, shoulders, arms or legs.

Since Manvi is a child and the disease is acute, so she is facing problem in breathing. She was put on ventilator for long. Then a hole was made on her neck to help her breathe.

Though she is slightly better now, for further treatment she must be shifted to AIIMS Delhi, says Prof (Dr) Narendra Behera, HoD, Paediatrics Department, MKCG. Dr Behera has been treating her regularly. For their regular visits, Manvi and her mother have become almost family members for the department, added Dr Behera.

Moved by Manvi’s long treatment and battle against Syringomyelia, MKCG Paediatrics ICU In-charge Sarita Nayak said, “Manvi is a familiar face in hospital. She is aware of every corner of the MKCG Paediatrics Department. We all sincerely pray God that the child recovers fully and leads a normal life.”

Manvi’s family has appealed Odisha Chief Minister to help them financially so that they can get the child treated outside the state.

Her mother Rohini has cited the case of Phulbani conjoined twins Jaga-Balia, who were provided government assistance for treatment. She expects similar sympathetic support from the state government, she said with tears in eyes.