Save Radin (An SMA type 1 patient)
Donation protected
Dear All
I am father of an SMA (Spinal Muscular Atrophy) type-1 son named Radin. He was born in January 2017, but when he was 2 months old, his symptoms started and we received his genetic test results around 5 months ago, stating he is affected.
There are attempts going on around the world to find a reliable cure for this unfortunate disease, and in early 2017, Biogen's Spinraza (Nusinersen) got FDA approval.
The point is, no matter how hard I tried, I could not have Radin enrolled in the clinical trials. We tried to enroll him in a study by Roche company (Firefish), but things went wrong as the eye test could not be done on Radin, and as we waited for Roche to arrange another center in Europe (Belgium), Radin failed the required age limit of 210 days and the trial could not be continued.
Unfortunately, Spinraza is so expensive (750,000 USD for the first year).
Radin has had his first hospitalization record just recently, as we have always done our best to help him avoid any complications. He is trying hard and although his doctor at the I-ICU predicted he would not make it, he has so far managed to open his eyes and enjoy the beauty of life once more, to everyone’s surprise.
We cannot stop struggling as long as Radin keeps fighting this disease. W cannot just sit and watch him die against his will and endeavor. He really deserves to be cured and given an opportunity to see the beauty of life.
I am father of an SMA (Spinal Muscular Atrophy) type-1 son named Radin. He was born in January 2017, but when he was 2 months old, his symptoms started and we received his genetic test results around 5 months ago, stating he is affected.
There are attempts going on around the world to find a reliable cure for this unfortunate disease, and in early 2017, Biogen's Spinraza (Nusinersen) got FDA approval.
The point is, no matter how hard I tried, I could not have Radin enrolled in the clinical trials. We tried to enroll him in a study by Roche company (Firefish), but things went wrong as the eye test could not be done on Radin, and as we waited for Roche to arrange another center in Europe (Belgium), Radin failed the required age limit of 210 days and the trial could not be continued.
Unfortunately, Spinraza is so expensive (750,000 USD for the first year).
Radin has had his first hospitalization record just recently, as we have always done our best to help him avoid any complications. He is trying hard and although his doctor at the I-ICU predicted he would not make it, he has so far managed to open his eyes and enjoy the beauty of life once more, to everyone’s surprise.
We cannot stop struggling as long as Radin keeps fighting this disease. W cannot just sit and watch him die against his will and endeavor. He really deserves to be cured and given an opportunity to see the beauty of life.
Organizer
Azadeh Izadi
Organizer
Temecula, CA