In August 2020, Susan Fiore’s son, Ernest Patti, experienced a life-changing injury.
Just a week into his school year at University of Miami, the 18-year-old was swimming with his new roommates when he was knocked off his feet by the tide. The resulting injury would leave him and his family navigating a new normal: life with paralysis.
The Help Hope Live campaign in Ernest’s honor has raised over $749,000 since 2020 to help with the extensive out-of-pocket costs associated with life after SCI.
We interviewed Susan about how SCI has impacted her son, herself, and her community.
The Call Every Parent Dreads
I had no experience whatsoever with spinal cord injuries or the disability community before my son’s injury.
At the time, I was excited about him starting college and moving forward with his life, and I was looking forward to focusing on my career as a practicing attorney. I had stepped back for a few years to focus on raising my children—Ernest is the youngest of three, and I was acclimating to my “empty nest.”
Then I got the call that parents live in dread of getting: that my son was injured.
Even with so little information from that call, as I experienced shock and disbelief, I remember thinking, “thank God he’s alive.” I was overwhelmed with fear and dread and sadness.
Just seven months earlier, I had lost my father. I was still processing the grief of that loss. During the plane ride down to Ernest in Miami, I was praying and talking to my father, asking for his help.
The man sitting in the aisle must have thought I had lost it, but I did not care. Looking back, I can see that I was deep in grief—for both members of my family.
Change, Strength, Sadness, and Pride
My life is completely different after Ernest’s injury.
I have a heavy heart, and I face sadness quite often. I’m not mired in it, or depressed by it, but I know it is there. I’m coming to terms with accepting that my life is so very different now.
It’s nothing compared to what Ernest grapples with, but for me personally, I have had to accept a lot of changes. At the time, I was thinking about retirement and ways to spend my free time—now, my priorities are different.
I am focused on helping Ernest become independent to the greatest extent possible. My own wants and needs (like many parents’) have been re-prioritized to put him first.
We love Ernest so much, and just like his dad and I did when our children were young, we continue to want to help in any way possible to assist him and his siblings to achieve their dreams.
I am so infinitely proud of him.
I say it often in my campaign updates to “Team Ernie.” So many people are inspired by him and his resiliency. He is so determined and unrelenting in his goals. It is truly remarkable.
When Ernest left inpatient rehabilitation and moved back home, he told me he was “never going out in public in a wheelchair.”
Look at him now: with his own inner strength, he has overcome that fear.
I have also seen strength emerge from the rest of our family. That strength has always been innate and present, but I have seen it grow, expand, and deepen.
Life as an SCI Parent
Right now, his dad and I are back and forth between Miami and returning to work in New York. We both hate leaving him, and we have tried to schedule ourselves so that one of us can always be in Miami with him, but we are not always able to do so.
He is in excellent hands with his caregiver, Warren—but that does not make it much easier for us.
We don’t complain too much, even to each other, but with performing at work and being the parent of a child with a spinal cord injury, let’s just say the challenges keep coming.
Fundraising and Community Support
We are stressed. We are both working in demanding careers, and we have an additional financial burden on top of what many parents are juggling with college and growing families.
We came to Help Hope Live for fundraising on the advice of Alan Brown, a dear friend who also experienced a spinal cord injury.
He gave us all the reasons to choose Help Hope Live, and we are very glad that we did!
Fundraising has helped us tremendously. I don’t know where we would be without it.
We have lived in our county for over 25 years. Over that time, I have come to understand what an amazing community it is—and our tremendous support extends outside of our area, too.
It’s overwhelming to contemplate sometimes, as the generosity is truly endless, and we are so very fortunate to have it—from family members to friends to neighbors to our parish, school networks, and young people Ernest’s age or our daughters’ ages.
You name it, we have had help with it. Dinners cooked. A Christmas tree and decorations delivered to our house for our girls while we were in Florida with Ernest over Christmas. Weekly dinners made for our children so they can have company and someone to talk to, just to listen.
We have friends who let us rant and cry to them regularly. Trips to the airport. Checking on our house when we are away. Offers to just take a walk together for a break.
The list is truly endless.
There have been standout moments with our fundraisers, too.
Our first run in May 2021 had strong attendance even as COVID made it difficult to gather. We had a bowling fundraiser in summer 2023 and it was overwhelming just how many people came out to attend.
In May 2024, we had a Team Ernie fundraising run, and Ernest was able to join us and did the entire course wheeling on his own. Three of my college roommates even showed up to surprise me. A local business let us gather on their patio after the run to hang out, talk, and enjoy a beautiful day.
I am often reminded by others that people want to help.
That is not surprising on its own, but it is eye-opening how MUCH people are willing to give—not just financially but in every way possible.
I never forget it.
Initially, Ernest’s sister, Victoria—who we call our social media manager—was primarily driving the fundraising efforts online. Ernest had enough to focus on. However, over time, he has become more active and has wanted to have a personal stake in those fundraising efforts.
Four years ago, I thought we had raised enough to carry us for far longer than it has. Multiple years after Ernest’s injury, our fundraising efforts are primarily to support caregiving, as Ernest still needs 24-hour care.
My only tip for SCI families is to keep fundraising. Do something at least once a year.
Hope and SCI Awareness
I do not think anyone can truly understand this injury unless they live it. At first blush, you might think, “Oh no—this person can’t walk again.” The injury is so much more pervasive and debilitating than anyone can imagine.
I’m so grateful that Ernest is with us, but his life has been radically altered in ways that I’m not even sure his father of myself can come to terms with.
The more awareness and focus around spinal cord injuries, the better.
What hope means to me is tough to define. I would say hope comes in so many forms.
Every single day, I am hopeful that I can lead a good life and be a good mom, a good lawyer, a good friend. I genuinely hope that I can be.
In terms of this injury, I hope that Ernest experiences an improvement in his quality of life—that every day becomes easier than the day before.
I hope that he has peace in his heart for the changes he has endured. I hope he knows how much we love and admire him.
I am thankful for the opportunity to share this little bit of my story.
I hope that someone reading this who has a loved one living with SCI will take some strength in reading about my small chapter of my son’s journey.
Keep up with Team Ernie’s fundraising efforts in honor of Ernest Patti at helphopelive.org and by following Team Ernie on Instagram.
