Little angel OLIVIA SANCHAREE NABONEE suffering from SMA needs support to continue her treatment
OLIVIA SANCHAREE NABONEE
Age- 2.5 Years
2.5 years old Nabonee is suffering from SMA (Spinal Muscular Atrophy- type 1). She is the 1st SMA patient in Bangladesh who is receiving medical treatment.
SMA (Spinal Muscular Atrophy) is a rare genetic disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for the children who are suffering from SMA.
Spinal Muscular Atrophy (SMA) causes muscle weakness and progressive loss of movement. It is caused by deterioration in the nerve cells (motor neurons) connecting the brain and spinal cord to the body’s muscles. As the link between the nerves and muscles breaks down, the muscles used for activities such as crawling, walking, sitting up, moving the head and even swallowing, become progressively weaker and shrink (atrophy) gradually.
We could identify some symptoms when our Nabonee was 25 days old. A s our fir st child w as d ied wi th having the sa me s ympto ms, we were aware and careful about Nobonee. We immediately went to the hospital and the physicians suspected that she has SMA. We then went to India and had the DNA tests. The results of the DNA tests confirmed that Nabonee is suffering from most critical type of SMA (Type-1).
Almost 10 years back our elder daughter Dhriti died at the age of 5 months with the symptoms of SMA. We could not identify her SMA by genetic tests due to lack of awareness among doctors and hospitals.
It is very difficult to describe in words what we felt when we realized that our daughter is an SMA patient. We could not save our first child with all SMA symptoms and our younger daughter was also suffering from most hazardous type of SMA (type-1). We were really helpless. We thought that like our younger daughter, the little girl would die without any medical treatment because it is almost impossible for any family to afford the prescribed treatment of SMA.
Our actual struggle started then. We were informed that only 3 approved medicines were available in the world and that the acquiring of the medication needed millions of dollars. It is next to impossible for any ordinary individual to bear the cost of the treatment. As SMA is a rare disease, we thought that there is a possibility of getting support from medicine manufacturing companies for SMA. We communicated with Roche Bangladesh Ltd. that produce one of the approved medicines named Risdiplam. After continuous struggles of four months, we finally received the medicine and the subsequent treatment of Nabonee started. We are profoundly thankful to Roche Bangladesh and Dhaka Shishu Hospital, especially Dr. Saoli Sarker for their unlimited sincerity and dedication. Read more…