Irvine Teen Assists Kids with Debilitating Diseases in India

Monica Luhar, India-West – February 5, 2014

Param Shah, an 18-year-old senior at Northwood High School in Irvine, Calif., is on a mission to instill a sense of hope in children who are suffering from debilitating diseases and developmental disorders in India.

In April 2013, the young Indian American started the Lotus Life Foundation, an organization that is partnering with the Sidhbari-based Chinmaya Organization for Rural Development to provide assistive devices, walkers and other orthotic devices to children in villages and rural parts of India where medical aid is hard to obtain.

CORD and Shah’s foundation have been able to fit 21 patients with assistive devices and another 40 patients are in the process of getting treatment.

The devices help position arms, legs and parts of the body in proper alignment. Posture is improved so that the children walk faster and more steadily.

Since its launch, Lotus Life has worked with patients with a range of diseases and neuron-degenerative disorders, including cerebral palsy, muscular dystrophy, spina bifida and paraplegia. 

Last summer, after the Irvine teenager researched the need to help children suffering from these disorders in the Himalayas, the foundation, with CORD’s assistance, launched a program there.

In India, about 53 percent of deaths are linked to chronic diseases, according to the World Health Organization. In 2005, out of an estimated 35 million people worldwide who died from chronic diseases, half were under the age of 70, and half were women, WHO said.

Shah says that nearly one of 50 children in rural India, in particular the Himalayas, suffer from a debilitating developmental disease. 

“Improper medical facilities and (a lack of awareness of) parents increase the incidence of these diseases and accelerate the physical and mental disabilities of these children,” Shah told India-West.

“In America, if you have a disability you still have an opportunity in life. You can still do something that you’ll be proud of. When I looked at the children in India that had the same disability, I realized how they don’t receive the same treatment or care that children do in America,” he said.

In Himalayan villages, Lotus Life and CORD have been able to provide free medical treatment to children with neurodegenerative disorders, transportation to and from medical facilities, recruitment of physical therapists and counseling.

“We not only give them medical treatment and help them grow, but we also want to instill hope in them — giving them that hope is something that’s truly the most important part of my organization,” Shah told India-West. 

However, Shah has faced challenges. 

He discovered that some families believe there is a stigma associated with having a debilitating disease. Others were in denial or weren’t properly informed about the types of diseases rampant in rural India.

Shah and CORD came up with a way to address these issues by reaching out to families in villages and working with a team of doctors. Shah believes there has to be an awareness first of the disease and its ramifications before doctors and organizations can plan the right treatment and support network.

His foundation has also launched another project in India aimed at assisting physically- and mentally-disabled children who were abandoned by families unable to provide financial support.

Children are housed at a boarding school in Kunjveri and Chonda, two villages in Gujarat.

In recent visits, Shah and his foundation have provided groceries, toys and other items of support to the children. Shah and Lotus Life were also able to donate money to help purchase Braille aids and abacuses for two schools catering to blind children.

The We Are Family Foundation recently recognized Shah as one of 30 global teen leaders. He will represent his foundation at the organization’s summit in New York City in April along with other teen leaders who have launched similar grassroots organizations.

After graduation from high school, Shah hopes to study neuroscience and biology at an Ivy League school. He said he has always been fascinated by healthcare and the sciences. When he was only nine, he lost his mother to cancer, an event that led to his wanting to make a difference in the healthcare field, particularly in India.

The Indian American student is also active at Northwood High. He is the president of Wolfpack, a student organization that integrates special education with general education students to create educational activities and helps students gain social skills.

Despite his busy schedule, the young student hopes to launch more projects and expand the foundation’s social media footprint.

Shah is currently in the process of working with United Cerebral Palsy, a research institute in Orange County, Calif., to improve treatment methods and find a way to better advance and inform villages in India about the disease through video logging and other methods.

For more information about the Lotus Life Foundation, visit lotuslifefoundation.com or e-mail Shah at paramdshah@gmail.com.

https://www.indiawest.com/news/16725-irvine-teen-assists-kids-with-debilitating-

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