“SARTHOK” suffering from rare Spinal Muscular Atrophy, need immediate treatment for living
Sarthok
6.5 Years Old
Our son Ajmain Nafi Nur (nickname SARTHOK) suffering from rare disease SMA (Spinal Muscular Atrophy- type 2). Sarthok is now 6.5 years old.
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).
Though he was fine at the time of his birth, we saw some symptom at the age of 6 months. He could not sit straight, found some weakness in his neck. We also saw that he faced some difficulties at the time of feeding.
We Went to Rangpur Medical College where doctors gave us some medical tests and found some issues in the medical reports. We decided to go to India with the hope that we might be able to give some treatments for his wellbeing. The doctors doubt that Sarthok is suffering from SMA. For more confirmation they gave us genetic tests. They send blood sample to USA which took almost 6 months to get the reports. When we got the reports we found that our son is suffering from SMA. Sarthok was 1.5 years old when he was diagnosed as SMA.
When we were worried about our elder son, our younger son Aswad Nafi Nur was born. He was also an SMA (Type-1) patient. With so many sufferings he died at the age of 6 months. We could not save him due to lack of treatment. Read More…