Pls approve a life-saving medicine for my son and other similar children.
0 have signed. Let’s get to 2,500!
I am writing to share our story and ask for help for our little boy Mohammed Kashif.
Mohammed kashif is our beautiful little 4.5 year old boy and he has Spinal Muscular Atrophy (SMA) type II.
Spinal Muscular Atrophy (SMA) is a rare genetic degenerative neuromuscular condition, characterized by generalized weakness of all the muscles in the body. SMA is a debilitating, life-threatening and rare disease - the leading genetic cause of death in infants.
He can't sit, stand, and walk on his own. Deformities are setting in all parts of body due to weak muscles. Symptoms are worsening with increasing age due to death of more nerve cells in his body. He cannot stretch his hands, cannot feed himself. Even he needs to be turned during sleep. He is fully dependent for all activities of daily living. Every moment is fight for him to live, to breathe. SMA has caused weak respiratory muscles in my son. Any respiratory infection may turn fatal in his case due to weak respiratory muscles. He also suffering from a Nephrotic syndrome, kidney disorder that causes the body to excrete too much protein in the urine.
Despite all of this, he is the brightest, sweetest, kindest boy you could ever meet… so full of love.
As parents, it is painful for us to see him deteriorate and struggling every moment. We do our best with diet, physiotherapy, occupational therapy to delay deterioration, disabilities, deformities, as SMA is a progressive disease with no cure till recent times. He is affected with scoliosis, bending of the spine in S shape, which is growing very fast even though we are giving regular Physio and using supportive aids.
There is a hope of improvement as on 23rd December, 2016, a medicine named SPINRAZA, manufactured by Biogen was given approval by FDA in USA (www.fda.gov European Union, Canada, Japan and Turkey. This is the First and only approved medicine for all types of SMA. This drug can improve motor abilities and strengthens muscles and slows down the process of deterioration. Spinraza can change life of a SMA patient. SPINRAZA, cost $750,000 for first year of treatment and $3750000 i.e. INR 5.5cr per year) from next year onwards. This huge cost is beyond our financial capacity. It's most helpless situation of knowing a treatment is available and we can't access due to the cost. So we are struck again with all hopelessness. We need the MEDICINE SPINRAZA BY BIOGEN for our SMA affected son, it will help him to stand, walk, and climb stairs, squat, to attain motor abilities required for activities of daily living. It will change his life. We will not need to fear for his life with every episode of cold and cough.
Time is a luxury for Mohammed Kashif and the other 200+ kids of curesma foundation of India waiting for this drug. SMA is a degenerative condition, we need this life saving drug TODAY.
We are calling on the Minister for Health & Prime minister of India, to approve funding for this life-saving treatment for Spinal Muscular Atrophy (SMA) patients; for Mohammed Kashif and the other 200+ children in India waiting for this chance of a better life, and in some case a chance of life itself.
Please share this post with everyone you know and create more awareness about the available treatment for SMA.
Please sign the petition for bringing the medicine for all SMA Kids… you can help by just adding your name.
Please refer any SMA patient you know to our organization curesma foundation of India.
www.curesmaindia.org; twitter.com/curesmaindia; facebook.com/curesmaindia
Thank you for your attention and support.
Complete your signature
0 have signed. Let’s get to 2,500!