Our story with Huntington's Disease started in 2004 with my brother Nilesh.
Nilesh was a caring person who loved to spend time with his friends and family. He enjoyed watching Laker games and the latest Bollywood movies. He often dreamt of his favorite actress, Madhuri Dixit.
Slowly over time, the family had noticed some changes in his behavior but as things got worse we seeked professional help.
Over a period of 4 months, doctors had tested for multiple conditions, but finally gave the diagnosis of Huntington's Disease. This was something we'd never heard of as we had no history of HD in the family. From that day, we knew life would change for us all.
After the diagnosis, the years ahead of Nilesh's life were both physically and emotionally challenging; however, he remained true to his character - strong, optimistic and always concerned for the well being of his family. His favorite phrase became "mind over matter".
As time went on, Nilesh lost the ability to drive, and we all knew he loved his Mazda 6! Our dad and uncle drove him from Bakersfield to Santa Monica twice a week so he could he finish college. After couple years of hard work he graduated from the Art Institute with a Bachelors in Graphic Design.
As the disease progressed we had to learn and adapt to new situations on a regular basis. Over 8 years, Nilesh went from a young active person to losing physical and mental abilities. He wasn't able to drive; writing became illegible; slowly went from a slight change in gait to not being able to walk at all; not being able to sit up straight; concentrate and keep his mind focused; lost ability to perform daily functions; speak and eat.
Nilesh eventually lost his battle with HD on August 29, 2012.
While Nilesh is still not with us, we continue to fight against HD to help those that are affected and their families. Something we'll never give up on!
With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones.
The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their family.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.
HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
Across the United States, HDSA currently supports: •54 volunteer led Chapters & Affiliates •43 Centers of Excellence •70+Social Workers •170+ Support Groups
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
Please register and help make a difference! If you cannot participate, please consider making a donation to my personal fundraising page by clicking the ‘Donate’ button at the top of this page.