The struggle for Siddharth started when he was 18 months. The first symptoms were awake all night, chronic cold and cough & severe acid reflux . Doctor's visit was added to our weekly schedule and we were not sure what was happening.
Siddharth never gave eye contact and would walk on toes and never respond to his name. He had poor fine and gross motor skill and was unable to hold onto any object.
After months of seeing different doctors , Siddharth was diagnosed with ASD. He was 18months old. We started his speech and occupational Therapy. That was the time we were in India and had very limited treatment options available.
April 2014 we moved here in US and it was then the real treatment started. Siddharth was already on GF/CF diet and we included other therapies , diet restrictions, Vitamins supplement. We did all kind of blood test , urine analysis , hair analysis, allergy test and all possible tests to find the cause.
Siddhartha had adenectomy in 2015 which helped him beat cold and cough and sleep better. 5 years and we had our first big win. Also saw some impovement in his motor skill and behaviour. We were hopeful but still waiting anxiously to hear any meaningfull word.
2016 Dec Siddharth was identified with SYN1 Synapsin gene mutation. SYN1 gene mutation is associated with epilepsy ,ASD and neuro development delays. His doctors suggested Stem Cell therapy and how it can help Siddharth get his speech and improve his neuro devlopment growth.
What is STEM CELL Therapy ?
Many of us might have heard Stem Cell Therapy and how world over it's being used for treatment of conditions which was thought to untreatable.
Stem cells are special cells which preserve the ability to poduce new cell and can form any kind of specialised cell and help growth and healing .
Stem cell has been used for treatment of autism and neuro devlopment delays. Recently Duke center for Autism and Brain development completed their first clinical trial and result were very very encouraging.
Duke Stem Cell research
CNN did a small program on Stem Cell Therapy Success. CNN Video
The procedure for Stem Cell is very costly and is not covered by any insurance. Also the treatment is not available in USA. We have been informed it would cost about 22000 $ .With my limited financial means I am unable to pay for the treatment and hence reaching out to everyone for assistance.
All I want is Siddharth get a fair chance in life and be able to experience and speak and share his joys and experience.
Siddharth needs all your blessing to make this journey . Any thing you contribute is greatly appreciated and no words can express my graditude . I thank you all for sparing time to read Siddharths story so far and I will post regular updates on his status.
- Govind Raj
- Sushila Rawat
- Kim Heck
- Vidhya Kumar
- Jalindar Tidke
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