Celebration of Robin Brown

Five years ago I thought I was fighting an orphan disease on my own. Then I found an internet page about a little boy named Marcus that had passed away from the disease known as lymphangiomatosis. Then Marcus’s website led me to a website a couple years later that would change my life. That website was lgdalliance.org. On this website I was able to read stories of other people that shared this horrible disease with me. This is when I got to read a wonderful story about Robin Brown. When I read the story of Robin I felt like we lived the same life except she lost the battle to this horrible disease in 2007. We worked for the same company but different branches, we were born on the same day one year apart, we both were diagnosed at the same hospital, and we lived and grew up within 16 miles of one another. I had to stop my job because the pain from this disease became debilitating. My family and friends put together a golf outing in my honor in September 2011. I knew that I had to meet the family of Robin and donate half the money made to the LGDA in her memory.

In September, 2011, I got to meet Robin’s wonderful family; her mom Rhonda, her sister April and her family, and her grandparents. From that day forward I participated in the celebration that her family started every year to celebrate Robin’s life. I’ve released balloons in her honor and on the balloons I write a letter that says, “In memory of Robin Brown, 12/28/1981 to 02/07/2007, If you find this balloon please visit www.lgdalliance.org and let us know where you found it.” Robin was always involved in charity events and one she was passionate about was Cancer and even was involved with local hospitals and played a smiley cookie for our employer’s yearly “Caring for Kids” so this year I wanted to donate to “Locks of Love,” a non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis. My hair was long enough and it needed cut. So Rhonda and April came up with a wonderful idea for me to do it on the day that we celebrate Robin’s day. April cut my hair, and I love it, then we went and released our balloons to celebrate Robin’s day.

I never had the chance to meet Robin but I had the opportunity to meet her family. I can’t imagine my life without them. I am so thankful that the LGDA brought this family into my life. Without the LGDA I wouldn’t have met so many people who suffer from the same disease.

 

Love,

Jessica

Before-After-2

 

 

 

 

 

 

 

 

 

Locks