“SHAHREEN” suffering from rare Spinal Muscular Atrophy, need immediate treatment to live a healthy life
SHAHREEN NOOR ALAM
6.9 Years old
Our daughter SHAHREEN NOOR ALAM suffering from rare disease SMA (Spinal Muscular Atrophy- type 2). She is now 6.9 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).
We did not see any symptoms in her during 1 year of her birth. She was completely a normal baby. She could sit and stand independently. But suddenly she was attacked by pneumonia in 2018 when she was almost 1 years old. She was hospitalized for almost 10 days.
After returning from hospital, we could see some changes in her leg. She did not want stand straight on her feet. She was trying to stand on her knees. After that we met a number of doctors to find out the actual reason of this. We went to India for her treatment but did not get actual reasons for this.
Finally in December 2018 when she was 1.8 years old, we identified that our daughter is suffering from SMA type-2. Read more…