Remembering Lou Ferrari -Team Ferrari’s quest to beat ALS – Bravelets

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Remembering Lou Ferrari -Team Ferrari’s quest to beat ALS

Posted on August 08 2015

Remembering Lou Ferrari -Team Ferrari’s quest to beat ALS
So why is Amyotrophic Lateral Sclerosis (ALS) aka Lou Gehrig’s Disease, different from any other horrific disease? Well, There is no treatment, there is no cure, and anyone can get ALS since we do not know how or why a person will get this disease. The ALS community is the “small fish in the big pond” and we need your help. ALS research lags behind Cancer, Diabetes, Heart Disease, AIDS, and other diseases. Mainly because there is a lack of awareness, critical mass, and personal connection. Every person I know has a personal connection or relationship with one or more persons that have had some form of Cancer, Diabetes, Heart Disease, or AIDS . So the awareness, personalization and critical mass is there to support the requests that come from these groups and their efforts. However not many people even knew what ALS was until the recent Ice Bucket Challenge, our family included, until May 13, 2014 when my husband Lou Ferrari was diagnosed with ALS. This is about his BRAVE story and why we need to raise funds and awareness.

The quest for research to determine the cause, develop treatments, and find a cure is deeply personal for me. My goal is to make this personal for everyone. The Ferrari family story is like so many families living with ALS, yet each families struggle with ALS is as unique as the ALS patients progression through the disease itself, ….continuing research is essential.

We went through many stages as a family with my husband Lou;
pre-diagnosis (hope), the diagnosis (denial), Living with ALS (the race for a cure), and then ultimately the life shortening reality of ALS (reality, anger, and resolve to find cure)

In late October 2013 my Lou complained of weakness in his right leg and we laughed it off as he was approaching his 51st birthday. “It sucks to get old!” Lou stated. But Lou’s symptoms got worse and he finally went to a doctor…..and so it began the long process to get to a diagnosis, where you must rule-in some other horrific disease to prove it isn’t ALS……But we had hope! We had hope that it was some other awful disease. We held each other at night and prayed for a brain tumor, spinal tumor anything but ALS for which there is still so little known.

On May 13 2014, after months of tests, and as my husbands weakness progressed, Lou was diagnosed with ALS. This once highly active, fit, father of three and loving husband received the worse news ever. Our family knew so little about ALS that they quickly went into what I call “cancer mode”. Denial sets in, there is no treatment? no cure? How could that be? Endless advice came to us from friends and family to treat this like other illnesses where there is hope.
We felt that we were in a race every day that Lou’s disease progressed and we needed a cure before we lost him.
The fact is, we do not know how to treat ALS, we do not know why you get the disease, and today you cannot be cured. But most of all we cannot treat this disease like Cancer, Diabetes, Heart Disease or any other disease simply because those treatments do not work on an ALS patient.

Lou’s progression was very fast the average life expectancy is 2-3 years, but Lou was not going to get that much time with us. The disease affected his diaphragm very early in the process which will eventually the lungs from functioning. Yet Lou said he was lucky, ALS would take his life before he would lose his voice. He could tell us when he had pain, when he had an itch or a basic need……most of all he could tell us how much he loved us. He was BRAVE for all of us he never gave up.

Finally, the reality of the life shortening affects of this awful disease hit our family hard. We were planning a small wedding ceremony for our daughter on December 13, 2014. It was a big milestone for our family. Lou would be able to witness his eldest daughter marry the love of her life. He fought hard to hold on to every day to be there on that special occasion. He was being held captive in a body that would not work and his ability to breathe on his own was almost gone. Instead of a wedding, our family prepared for Lou’s funeral. Just 6 days before my daughters wedding on December 8, 2014 only 7 months after he was diagnosed …..Lou lost his life to ALS…we lost the race….and the world lost the most incredible human being I have ever met.
We promised Lou we would not give up the fight and so we are here asking that you not give up this fight and join us by supporting ALS Association by purchasing and wearing your Bravelet. Wear your Bravelet to remind you of how brave the ALS patients are and support ALSA for research and services for those living with this disease.
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