Soon, we regained ourselves, we decided, whatever it takes, we will start our fight against Autism and continue till the last day of our lives. We will not sit down and watch our son slipping away from us. I decided that I will not go to work, I need all my time for Sayan, the only goal of my life is full recovery of my son. We decided, we will do everything we can, we will provide all possible treatments, even that means we spend all our life savings and go deep down in debt. Sayan's recover is more important that everything we have.
It all started when Sayan was four and half months old, he was diagnosed with Grade 4 Vesicoreteral Reflux, a condition where his urine flows back to his kidney, he had very severe Urinary Tract Infection, his kidney was infected and was hospitalized for ten days. He was put on daily dose of antibiotic which messed up his GI system to point that anything he eats, he could not keep in his stomach. He will vomit a few times every day. Even with the daily antibiotic, he will catch urinary track infection.
Sayan was a normal little kid, always laughing. Sometimes between 6 and 9 months of age, he started calling me 'momma', called his dad 'dada'. Got his MMR shot when he was 14 months, he slowly stopped talking, he was now only making a few sounds. He was slowly loosing eye contact and slipping into his own world.
Not having much knowledge about Fairfax County School system, we put him into pre-school autism class when he was 2 years old and he regressed more. After few months, during a meeting with school, we found out that Sayan was crying for hours every day from the very first day of school, he was not eating or drinking at school. We were furious and devastated, felt cheated and hurt. School never informed us before. Our son suffered so much. His first year of school not only make him suffer mentally, he became so weak that he started catching all different kind of diseases. He was diagnosed with Lyme, Panda( autoimmune) ,Candida. Now his recent Lipid panel is showing very elevated level of LDL cholesterol,& Triglyceride.
We had to get help from an advocate to get to allow school to pick Sayan early on medical grounds. Long fight with school started from that day and still we are fighting for the right placement. He have improved so much, it's hard for many to think that he is autistic. With support, Sayan is ready for General Education with other kids - his friends he loves to be with. School fails to recognize that and made him stay in Special Ed - Autism class with kids. We found another good attorney, but her charges are beyond our reach. She needs $5000 upfront retainer fees before she would start helping us. It's not the time to stop our fight for Sayan.
Sayan is 7 years now. Even after five more years, we are still fighting. Lot of times, we feel that we do not have any more strength left to fight, we have not slept well in years. We have spent all our life savings, we have lot of credit card debt which will take us years to repay. Just his homeopathy treatment costs us around $810 per month. In addition we are doing different kind of Bio medical treatment as prescribed by his DAN doctor. We are accumulating thousands of dollars in lawyer's bill every year fighting with school so that he can get the education he deserves. Sayan needs lots of help and we do not know how much longer we can afford since all our monetary avenues are drying up.
When we see the tremendous improvement in Sayan, we regain our strength. Now, we cannot stop him from talking. He is no longer living in his own world, he always needs somebody to interact with him. He wants us to play 'Candyland', 'Bingo' with him and when we see him laughing at a silly joke, we know that all our effort is paying off.
We need your help to fully cure Sayan, give him the extra help that this beautiful boy needs with his education. He loves basketball, swimming, gymnastics, but he needs a little extra special help and the cost adds up. A few more years, we are sure that he will fully recover if we can provide the right support.
Update (12/11/2018): We would like to thank all our friends for your generous donations. With your kind support, we were able to move Sayan to his base school with support. We were able to afford the lawyer's fees and pay her $2325 for her service. We also spent the rest of the money on his treatment.
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