My name is Diane Baijoo and I started this gofundme on behalf of my father, Saisnath Baijoo. His story started about 4 years ago when the symptoms began with slurred speech, problems with his balance and walking. After months and months of tests, workups and doctors' visits he was unfortunately diagnosed with the horrible ALS (Amyotrophic Lateral Sclerosis). His world was turned upside down with this news.
A little about ALS....It is a VERY rare disease only affecting about 12,000-15,000 in the United States yearly! It is a progressive disease that affects voluntary muscles (used for walking, eating, chewing, talking etc). Unfortunately, the majority of those affected, live an average of 2-5 years. There is no cure!! :(
It has been an uphill battle for him throughout the years where at the present time, he is now barely working, his walking, speech, balance and muscles have deteriorated. But through it all, he has always maintained hope and keeps on fighting everyday.
Sadly there is only one drug that is FDA approved for ALS but the side effects were alot worse than the actual benefits of the drug to him.
BUT......finally in May, the FDA approved another drug, Radicava, the first new drug for ALS treatment in 22 years!! We are hoping that with this drug it will help his everyday life to be a little less difficult. It won't be a cure but will hopefully ease his symptoms.
Time is of the essence: The drug will be available in the U.S. in August 2017, but of course it comes at a cost. Each single IV infusion is $1000 which would be given daily in 28 day cycles. We are hoping to raise enough money for a year's worth of treatment. It was estimated as high as $150,000 a year by the drug company.
Funds: All the proceeds would go directly towards these IV treatments and doctors' visits which he so direly needs.
Please, please any amount is not too small to help this loving grandfather, father, brother who has touched so many lives. This is a matter of life and death.
We are calling on the generosity of family, friends, neighbors and strangers to help us.
We thank you in advance!
The Baijoo family.
Read about ALS
Read about new ALS drug
If anyone has any questions at all please don't hesitate to message me. #downwithALS