Be India’s voice for Spina Bifida: The most complex life-threatening disability

Hi,

Thanks for landing on this page. My name is Vivek Bharadwaj, and I was born with Spina Bifida: Myelomeningocele. I have had six major surgeries and multiple minor surgical procedures. Wait, this is not about me .. this is about what I have founded and started. My mother and I have founded SPINA BIFIDA AFFLICTED FOR STRENGTH, HALENESS AND AWARENESS (SASHA) FOUNDATION – India’s No.1 Spina Bifida Support and Awareness Network.

Let me ask you a few questions … do you know what Neural Tube Defects (NTDs) are? Do you know what Spina Bifida is? Are you a parent or want to be a parent? If the answer is yes, just like every other parent, you would want to have a healthy child, right? If you don’t want to be a parent, you still wouldn’t want any child to be born unhealthy and suffer, right? Is there a 100% guaranteed way to have a healthy child? The answer is no. 

What are Neural Tube Defects?

Neural Tube Defects (NTDs) are serious birth defects of the brain and spine. NTDs are caused by incomplete neural tube closure during the first month of pregnancy. NTDs are the most complicated and most neglected.

What is Spina Bifida?

Spina Bifida is also an NTD. Spina bifida is a congenital neural tube defect where the embryonic spine fails to close completely during the first month of pregnancy, resulting in a damaged, exposed, or malformed spinal cord, making it the most complex life-threatening disability. Spina Bifida is incurable and not completely preventable.

Spina Bifida has a waterfall effect that creates cognitive issues, mobility issues, bladder and bowel issues, orthopaedic issues, chronic neuropathic pain, scoliosis, and hydronephrosis. An individual with Spina Bifida can't urinate or pass stool on their own, as and when they want. There are three types of Spina Bifida: myelomeningocele, meningocele and occulta. Myelomeningocele is the most severe form of Spina Bifida. People with Spina Bifida have to practice Intermittent self-catheterisation to void urine and manual evacuation of stool to defecate, their whole life. Some Spina Bifida people can walk, some need support, and some are wheelchair bound.

Some Disheartening Spina Bifida Facts:

·        Births in India: Every year, over 100,000 children are born in India with Spina Bifida, 4 or 5 children in every 1000 births.

·        Early Deaths: At least 1 of every 4 or 5 children born with severe Spina Bifida dies in the first month or year of life.

·        Average Surgeries: On average, a person with Spina Bifida has 4.97 surgeries in their lifetime. A complex multisystem comorbidity

Why we started the SASHA Foundation:

Our inspiration to start this foundation stemmed from the struggles we faced and the fight we waged. My parents and I have gone through hardships in life, not knowing what hurdles to expect and how to navigate them. There is no awareness about Spina Bifida. See, you also didn’t know about it. The healthcare givers provided no instructions on what disabilities it will further create and how to counter them medically, mentally and socially. Since 2004, my family and I have been bridging this gap by helping and guiding people with Spina Bifida and their families on various aspects of this disorder.

How do we use our funds?

Spina Bifida has a socioeconomic angle. Spina Bifida is a money-draining disability. Individuals need catheters and lubricating jelly daily, and also need mobility support equipment like Knee Assisted Foot Orthosis (KAFO), Ankle Foot Orthosis (AFO), crutches, and wheelchairs. They go through many surgeries during their life.

95% of your contributions are spent on surgeries, support equipment, medical supplies, and awareness initiatives. Surgeries 36.6%, support equipment 24.4% and, medical supplies 24.4% and 9.8% on awareness.

Donate and Save Tax

Our foundation is registered under Section 80G and is authorised to issue 80G certificates, allowing you to claim tax exemptions under the Income Tax Act of 1961. 

Donate Now

Let’s make a difference together! Your generous gifts will profoundly impact the lives of individuals affected by Spina Bifida. With your support, we can fund essential medical research, provide crucial resources and care to patients, and raise awareness about this condition. Thank you for your compassion and generosity.