Who we are

"I will continue to fight on" - Jennifer shares her family's story

Definition of Huntington's Disease (O.K., so this is my definition of HD): mix Parkinson's Disease, Alzheimer's Disease, ALS, MS, MD in a bucket you come up with Huntington's Disease. The only difference is that HD is strictly genetic. This has been the easiest way for me to describe to friends and family since my husband's diagnosis with HD in 2000.

Ron & Jennifer with their 2 daughters
Ron & Jennifer with their 2 daughters

I'll never forget that day as long as I live. Ronny and I knew what this sentence would carry, he more so than I. We were waiting, after hours of testing, for the doctor to come in with his results, I was so scared that if it was HD Ronny would try to harm himself. I finally gathered up the strength to ask him if he would ever try to do something like that and if so we were going to walk out of the office that moment. He put my mind at ease and while we sat and waited a pact was made between the two of us. He promised to fight, to do whatever the doctor told him as well as take any medication to keep him as healthy as possible and I promised to stand and fight with him every step of the way. Our daughters were toddlers at the time, Rania was three and Olivia was one.

It is now 2012. So much has changed and not for the best.

Here is a brief time line of what this horrible disease has done to my family:

2003 our daughter Olivia, 4 at the time, began showing slight developmental delays, a lisp, falling and stumbling a lot. Then the seizures started. First as focal seizures then escalating to the more sophisticated tonic clonic aka grand mal seizures.

In 2007, Ronny's younger brother was diagnosed with HD, he is only 14 months younger than Ronny. Later that year Olivia's seizures were out of control and with lots of urging from medical staff, family and friends we finally had Olivia tested for HD.

March 27th, 2008 at 2:47 p.m., while sitting at my desk at work I received the results by her neurologist. I felt like I was sitting on top of a wind tunnel. There was a howling in my ears I couldn't stop. I couldn't move or breath. I couldn't function for what felt like hours but was only minutes. My worst fears realized. My heart was broken. My daughter had Juvenile Huntington's Disease.

Olivia had lost so much weight we made the decision to have a feeding tube put in place to help keep up her nutrition. The tube was put in November 2008. By then we had aids in our home for both Ronny & Olivia, but once the tube was in Olivia's aids were replaced by nurses and we were approved for overnight care to help with her feedings and meds (as well as for my sanity). I still work full time and need to be there for our other daughter Rania as well.

Late in 2009 Olivia's seizures were out of control again and we spent most of December in Children's Hospital. The trauma from all the seizures as well as the progression of the disease basically left Olivia wheelchair bound. And still we all fought on.

2010 was another turning point in our fight against HD. Ronny had MRSA and had to be hospitalized for 3 weeks. While there he lost so much weight we decided it was time for a feeding tube for him as well. Life was much more difficult for both of them and not safe. Between infections and falls it was decided that Ron go to a nursing home. It was just too much with both Ronny & Olivia so severely sick. I would take the girls at least once a week to see him and I would go another night so I could shave and visit with him without all the commotion. Rania's friends would like to come with us.

Ron & Jennifer with their 2 daughters
A family photo taken on a rare occasion when Ron is on a home visit from the nursing home.

June of 2010 brought another blow to our family. Ronny's youngest sister was diagnosed with HD. She is the youngest of the four siblings and has children of her own. November and December were more hospitalizations for Olivia. Infections would cause her seizures to go out of control. December was so bad she was on a ventilator for 3 weeks. Again, the progression and damage from all the seizures now left Olivia bed bound. A DNR was signed in January 2011 for Olivia and I made the decision to not take her back to the hospital for any more infections or out of control seizures.

Olivia passed away January 15, 2012. She was only 12. As devastating as this is to ANY parent losing a child, I will continue to fight on for her sake. To fight along with her father and her aunt and uncle as well as all in the HD community to help raise awareness about this horrific disease.

Joanne M. Luz
PCHD Care Coordinator
PO Box 123
East Greenville, PA 18041
215-219-3521
joannehdcare@phillycurehd.org