A Sulphur family has buried four loved ones that have all died from an inherited gene mutation. Now they are speaking out about Huntington's Disease and the deep impact it has had on their lives.
Dolly Ardoin and Mike Lanclos are first cousins tied together by a bond of family and of a shared struggle. "Mom was healthy up until she got into her 40s and then in her mid-40s, we started to notice some stuff with her walk and knew something was wrong," said Mike.
Mike's mother, Patricia, was the first to be diagnosed with Huntington's Disease, an inherited and progressive brain disorder that kills nerve cells in certain parts of the brain. "It was hard for her to keep her balance and then the little things she always did to take care of herself, all of a sudden she couldn't take care of them anymore," he said.
A neurological test and brain CT scan showed Patricia's loss of brain tissue. She went from beautiful and seemingly healthy to non-verbal and unable to walk or eat on her own.
Then Dolly started noticing the changes in her mother, Datha. "My mom was always active. She bowled three times a week and she got to where she didn't want to do anything. She wanted to stay home more," said Dolly.
Dolly's and Mike's grandmother had also exhibited these same symptoms, but was never diagnosed.
The family pattern continued after Datha's diagnosis, with her son, Ben, also being told he had Huntington's Disease. "I got mad at first, you know, angry," said Dolly, "and I cried a lot."
Ben died in 2013, Datha in 2008 and Patricia in 2004. Their deaths, though, do not mean the disease ends. If the parent passed the gene to the child, they too will develop it. "There's always that in the back of your mind," said Dolly, "a 50/50 chance."
Dolly has not yet decided to go through the blood test to get the answer. Mike did and he found out he does not carry the gene. "You could ask someone if they would rather win the million dollar lotto or get that information," said Mike, "and I'd rather get that information."
Mike and Dolly say it is time to share their family's story to raise awareness for this cureless disease and change the prognosis from hopeless to hopeful. "There's not a cure, but hopefully we will find one," said Dolly.
Ben, Patricia and Datha all had adult onset Huntington's, which typically shows up around age 40. The average life expectancy after diagnosis is 10 to 15 years.
Children can also have a juvenile form of the disease.