Two brothers suffering from rare SPINAL MUSCULAR ATROPHY diseases need treatment access
Faiyadh Bin Omar
Age- 6 Years
Faizan Bin Omar
Age- 4.8 Years
Our two sons Faiyadh & Faizan are suffering from SMA (Spinal Muscular Atrophy- type 2). Faiyadh is now 6 and Faizan is 4.8 years old. They both are SMA.
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).
Both of our sons were perfectly fine during first year of their births.
We noticed something wrong with their leg and hand after 1 year. Our doubt was created by seeing something wrong in my elder son. He could not stand on his feet. His hands shook all the time. But it was very common that a one year old child can stand and creep. After seeing these symptoms we decided to go to a child specialist to identify the reason behind this.
Faiyadh at the age of 1 Month
Faizan at the age of 3 Days
We went to a number of doctors and hospitals of Bangladesh to identify the reasons of the weakness in his feet. Doctors gave us some medical tests and found that all the reports completely fine. They suggested us not to worry and told that every children’s capacity is not equal. He will walk but it may take some more time. But we could not see any changes even after completing 1.5 years old. After that we managed an appointment with Prof. Narayan Shah and he asked us to do EMG and a genetic tests. Finally these tests identify that my elder son has SMA. He was 1.8 years old when his SMA was identified.
The most unfortunate thing is that when our elder son was diagnosed at that time our younger son was 5 months old. Because of delaying in the diagnosed of my elder son and lack of knowledge regarding SMA, we could not decide about our second child. After getting genetic tests we found that our younger son is also effected by SMA.
We found ourselves totally helpless when we heard that the treatment is not available in our country and the treatment is only available in developed countries and cost is around taka 22 crore.
We went to India in 2019 with the hope that we might get some information or guideline to keep my son physically fit. There we met some members of Cure SMA Foundation of India. After that we started searching regarding the medicine for my son. We came to know about Risdipalm which is produced by Roche. Unfortunately we could not manage the medicine.
Everyday our sons are losing their muscle’s strength and become weaker. Our elder son could not stand and younger son can manage to stand but hardly walk. Both of them are now wheelchair bound. Our younger son can manage to ride his cycle and passing all his day to move one room to another room by the help of his cycle. Like all other SMA patients we are seeing change in their spine. Their spine start bending. Their ability to grab things by hands is continuously decreasing. That is why speed of the hand writing is also affecting. We also have noticed some contracture in their legs.
Most of the time they stay at home but we are preparing our elder son for school. In spite of having so many difficulties he loves studying. In Bangladesh it is very difficult to continue the study of this kind of children as most of schools and places are not wheelchair accessible. Faiyadh and Faizan want to study even after having low muscle strength.
Since SMA does not affect the brain, our children can lead a normal educational life. Our urge is to show positive attitude to these patients so that they can contribute to the society like everyone.
Though the treatment of SMA is now available in Bangladesh, it is out of the buying capacity of almost all the families of our country. No parents want to see that their children is going to die without getting treatment but the treatment of SMA is so expensive (around 10 Lac BDT every month) that no family cannot bear this cost by themselves.