As Daniel French’s big sister, Vannessa Blais was present for both his entry into this world and, 31 years later, his departure from it. Today, she finds solace in the memories of their time together and the “goofy little brother” who loved with all his heart.
“Sometimes Daniel would drive me nuts with how silly he was, but that could just be because I’m his sister,” Vanessa recalled with a laugh. “He was funny and friendly, and he never met a stranger. He’d talk to anybody — it didn’t matter what your walk of life was, who you were, or how much money you made. That’s just the kind of person he was. He would give you the shirt off his back, he was kind, and he was a good person.”
On July 30, 2020, Vannessa’s world turned upside down with an urgent call at work informing her of Daniel’s passing. “I drove to my stepmom’s house, and we went to the hospital together,” said Vannessa. “On July 31, he was legally declared brain dead. We waited until my dad arrived from Florida and everyone said their goodbyes.”
Although Daniel wasn’t registered as a donor at the time of his death, his family made the generous decision to donate his organs. Because of this, several lives were saved — including that of Florida resident Steve Hilfiker, a single father of four kids who received Daniel’s heart after a long battle with sarcoidosis.
“People are dying from sarcoidosis, and they don’t even know they have it,” said Steve. “The reason this is relevant for organ donation is because it’s a chronic disease that’s being overlooked by the current healthcare system. I’ll spare the details, but a doctor finally diagnosed my enlarged heart with his hands — which was a little frustrating after being misdiagnosed for five years. They tried everything they could, but I came in too late. I was in advanced-stage heart failure. At one point they told me I had weeks to live and that I needed a transplant right away. I told my children that not only am I going to survive, I’m going to ski again.”
When his heart eventually failed, Steve was put on a balloon pump to force his heart to beat. During this time, he had seven heart offers in three days. “When I finally received Daniel’s heart, it was like a literal death and resurrection, because I was on life support for three days,” said Steve. “For those who are waiting, the answer remains in hope. My motto is ‘faith + perseverance = victory.’ Some form of faith, whatever your faith may be. Never stop believing, even if your faith is entirely in yourself. Don’t ever give up.”
Recovery was rough — but after 17 days in the ICU and a medicine change, things started to improve. “They got me up on the walker and then I nailed it in cardiac rehab,” said Steve. “I didn’t ask for permission, but I hiked Sharptop Mountain in Jasper, Georgia 90 days after my hospital discharge. Climbing that mountain was a moment of victory for me, and I wish I’d had a flag to shove in the ground. It was conquering a journey.”
Following his lifesaving transplant, Steve established the Daniel Foundation for Organ Donation and Sarcoidosis Awareness (FODASA), dedicated to shedding light on chronic illnesses and promoting organ donation. The foundation’s efforts, including documentaries and advocacy work, have garnered significant attention, culminating in international recognition at the Cannes International Film Festival.
Establishing the organization wasn’t enough, however — Steve was determined to express his gratitude in a letter to the family, penned shortly after his surgery. He included a picture of his kids and explained how grateful they were to still have a father. In May 2021, Steve finally received a response from Vannessa via HonorBridge. After release forms were signed, Steve and Vannessa spoke on the phone and agreed to meet in person on Aug. 14, 2022. With Vannessa’s permission, the cameras were rolling.
“My nephew is a film director, so he captured all the wonderful emotion and memory on video of us meeting in the park and her listening to her brother’s heart for the first time,” said Steve. “It’s all in the latest film, called ‘Daniel, My Brother.’ It’s a short documentary that we are submitting to Sundance and other film festivals around the world.”
Vannessa described the meeting as poignant and bittersweet. “It was nice to know that my brother lives on in someone, but it was also a reminder that we lost him,” said Vannessa. “But Steve shared with me about the foundation that he started in my brother’s honor, and I was blown away by that.”
At that first meeting, a special bond was formed, with the two dubbing each other “sister and brother-in-life.”
“She brought a bunch of pictures and told stories of Daniel, which was great, because I wanted to know all about him,” said Steve. “It’s been a fantastic relationship from the start. I feel like I know Daniel because she’s been so open.”
Long before the name had any meaning to him, Steve had recorded Elton John’s song “Daniel” while at a concert a year before his transplant. Once he learned his donor’s name, the lyrics “Daniel, my brother” held special significance for him. Because of this, Steve invited Vannessa to attend five Elton John concerts with him in Charlotte, Atlanta, Nashville, and Los Angeles. At one point, the pair made it onto the jumbotron, seen by 70K people. Steve proudly held a sign saying, “Heart Transplant from Daniel” and Vannessa held a sign saying, “Daniel is my brother.” In another viral moment, Vannessa listened to her brother’s heart during the song “Someone Saved My Life Tonight.”
“She’s enjoyed the travel, she’s enjoyed what this has brought to her life,” said Steve. “It’s been fulfilling for me to help her to find some meaning in tragedy. For her to see that her brother’s death was not a total loss, that something good came out of it. It means as much to her as it does to me.”
In every city they went to, the pair got on the news and advocated for organ donation.
“I didn’t quite know what to expect,” said Vannessa. “At first, I thought, do I want to embark on this? Am I emotionally ready for this? But then I thought, you know what, the best way to celebrate my brother is to go. If it was up to my brother, he would say, ‘Vannessa, you have the opportunity to travel and do this?! You better go, girl!’”
Despite the concerts, the press, and all the big, viral moments, Vannessa says that the most rewarding thing about her journey so far has been gaining a brother. “I lost my baby brother, but I also gained a big brother. I can pick up my phone and I can call him and talk to him about anything, whether it be my kids, my work, or starting a business. He will help me figure out and navigate what I’m going through. He’s truly a brother to me.”
Steve fulfilled his promise to his kids to water ski again exactly 11 months after his heart failed, with all four of his children on the boat to witness the moment — just one of many beautiful milestones that Steve has been blessed with over the last four years.
“There is a quote that I use pertaining to the disease that I had: we all have a sarcoidosis,” said Steve. “We all have to go through something in this thing called life. No matter what your disease or your sarcoidosis happens to be, whether it’s a tragedy, a health issue, a relationship issue, or something else — you’re not alone. We all have difficulties, but the rest of life is beautiful. Enjoy the blue sky, enjoy the birds chirping and singing, and enjoy the power of wonderful relationships.”
More than 100,000 people are waiting for lifesaving organ transplants. Together, we can save lives. Register your decision here: https://bit.ly/3hmiWKE
