My husband Larry was a firefighter for the FDNY. He was there the 1st day 9/11 and many days after helping with rescue and recovery efforts.

In 2020, he came down with what doctors believed was encephalitis / encephalopathy. He was hospitalized for total of 10 days having shown evidence of memory loss. He was sent home from the hospital after 2 weeks and  seemed to be recovering. Seven months later, he had a seizure in January of 2021.

Post seizure, he seemed to be making a slight recovery once again, and they believed he had viral encephalitis. Our relief in his slight recovery was short lived. I noticed him becoming confused and experiencing tremors and weakness.  I took him back to neurologist at Columbia Presbyterian  in NYC where they did more testing. Together we consulted with an autoimmune disease specialist who, in turn, consulted The Mayo Clinic. They came back with a diagnosis of a rare and complex,  1 in 1 million progressive encephelomyetis with rigidity monoclonous.

My husband is now 62, has had a brain surgery, 2 seizures, and now requires transfusions every 4 week.  Before this, my husband was a healthy, happy, man. He was very active, non-stop man who was always doing for others and now, he needs help with everyday living.

There is barely any research literature available on this disease as it is so new. In doing my own research to find out anything I could to help my husband, I discovered while a small percentage of its causes are hereditary (about 30%), a bigger cause is environmental or toxins (70%).

I feel like anyone working or volunteering at the WTC that day, went running in towards those towers without concern for their own life in the interest of helping and saving others. Now, we are asking for the same. We are fighting for the Victims Compensation Fund to consider all autoimmune diseases, in consideration for assistance funds.  They say that anyone can get autoimmune diseases, it is not 9/11 related. The cancers are covered by the fund (thankfully!). They were agreed to be 9/11 related, rightfully so. In that line of thinking, why isn’t Larry’s condition, which is known to be largely caused by toxins and environmental conditions, not even being considered for a deeper look? There is a community of people that worked down at the WTC site that are now battling new rare diseases, including one that is suffering the same complex symptoms as Larry is experiencing.

It sickens me to the core that his being down at Ground Zero, and now battling something like this that is so rare, is not even being considered for 9/11 assistance.

On August 31st he will have been fighting this for two years already.  

Please sign and share the petition to have autoimmune diseases like this added to the ailments covered with 9/11 assistance funds.  Anything you can do to further efforts to take care of those who took care of so many others on the worst day of their lives would be greatly appreciated. God bless you all!