Tom Leonard's ALS Support Fund

On December 20, 2018, my dad, Tom Leonard, called me and said he had some news to share. My mind immediately went back to May of 2015 when I received a similar call. That time he told me that he had been diagnosed with cancer. This was news that shook our family and fundamentally changed how my dad approached his health moving forward. This time, when he called, I thought he was coming over to tell me that his cancer had relapsed. 

I never thought that I would have wished for that to have been the case rather than to have the conversation that followed.

My dad, through tears, told me he had been diagnosed with ALS. I vividly remember the next few phrases that followed. I said “I don’t know what that is, or what that means, but I know it’s not good.” To which he responded “It means I won’t be around to see any of my grandchildren.” We both hugged and cried as that sank in.

I spent the next weeks frantically reading anything I could find about ALS. I was hoping to find some sign of hope, some unique treatment in another country, or something the doctors here simply haven’t found yet. My research provided me with no comfort. ALS has no cure. As it progresses, it will slowly kill the function of his muscles. It will take away all of his movement, both voluntary and involuntary. It will take away his independence. Eventually, it will take away his ability to breathe. Ultimately, ALS will take my dad’s life.

We are already seeing this progression begin. He is now incapable of verbal communication, a skill he relied on to make a living, as his career was in sales. He can no longer eat as it poses too much of a choking hazard and now relies on a feeding tube for nutrition. His dexterity and fine motor skills are dwindling as the muscles in his hands and fingers are losing strength and mobility.

The double edge sword of ALS is while it continues deteriorate his physical function, it will leave his brain untouched. His thoughts will remain crystal clear through out the remainder of his time, however he won’t be able to act on any of them. He will essentially become trapped within himself.

The typical life expectancy after an ALS diagnosis is three to five years. 

My dad has always worked to provide a comfortable life for me, my two sisters, Laura (19) and Maggie (18), and his wife of twenty two years, Liz. Even in times when finances may have been tighter than normal, he did his best to never let it impact our ability to pursue opportunity. Since his diagnosis, my dad has been forced to stop working - a milestone he did not anticipate, nor was prepared for. As his verbal communication deteriorated, so did the possibility of continuing his sales career or beginning any other new income providing role. This has left my family in a state of financial emergency.

Collectively, we have extensively researched any aid that we may be eligible for through a wide variety of assistance programs only to learn we qualify for few. We are grateful for what we do qualify for, yet even with aid, we are still in a financial deficit.  It will not cover our growing need to move into an accessible home, several assistive medical devices, medications, in home care, and eventually end of life related costs. 

We are left with only one option. Ask for help.

My dad’s biggest concern now is what is going to happen to all of us, his family, once he is gone. It not only speaks greatly to his deeply rooted love for us all, but also towards his selfless nature. Putting the concerns and wellbeing of his family over his own, even while being faced with his own mortality, is something that is engrained within his character. He has always been “the guy” who helps others in any way he could. It is something that simply makes my dad, my dad.

ALS has already stolen a immeasurable  amount from my family in many ways that have been unpredictable and beyond our control. Giving my dad the peace of mind that his own medical needs will be financially met, and to not be an ongoing financial burden on his family after he is gone, is something that we can all work towards together. 

It has taken countless hours of research, a great deal of humbleness, gratitude, and an enormous amount of tears to arrive at this point - asking for your support in any way that you can give and to also kindly share our story with anyone in your circle.

From the deepest part of my heart, thank you

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Organizer and beneficiary

Jess Leonard
Winnetka, IL
Elizabeth Leonard

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