Huntington’s disease has been a part of my life for 14 years now, and will remain so for the rest of it. My husband Ronny was diagnosed in 2000; our daughters were only three and one year old at the time. Our youngest daughter had slight developmental delays that appeared around the age of 4 ½, soon after she began having seizures. By late 2007 her seizures were out of control with no apparent reason and therefore had to test her for HD. She was officially diagnosed with Juvenile Huntington’s Disease March, 2008 at the age of 8.
In 2012 Olivia lost her battle with JHD and although there are days when I can’t even bear it, I do and must for my husband and our other daughter Rania, as well as our other family members with HD or at risk. Olivia may no longer be here but her strength pushes me to continue to bring awareness and support to anyone in the HD Community anywhere.
Olivia taught me so much in her short life. As bad as it was she always had a smile on her face and found the funny in everything, much like her dad. That, along with the love and support of family, friends and many in the HD Community worldwide pushes me to keep the fight going.