In the time it takes to bring a life into this world, Allison D’Ambrosio Bones watched two precious lives leave.
And not just any lives. In a short five-month span, Allison lost her husband Jamie to cancer, and then her son, Travis, to a hidden, deadly rare condition. She struggled with her life’s purpose, but providence brought her into the Rare Disease Community and offered her a chance to create a legacy for her child.
Travis Bones, then just 4 years old, died suddenly of Isolated Congenital Asplenia in 2018. The extremely rare and often undiagnosed genetic disease left him without a functioning spleen, which is crucial to the immune system. Being born without a spleen left Travis with no defense against life-threatening infections.
ICA is virtually undetectable. There is no diagnostic test or genetic screening to uncover the condition. Even with weekly ultrasounds by a maternal-fetal medicine specialist, no one ever noticed Travis had only a splenic remnant. It was only after his autopsy that the boy’s condition was revealed.
“It literally came out of nowhere,” Allison said. “He had never been in the hospital and was rarely sick. I had no idea what was going on. Here was this perfectly healthy, happy, full-of-life child breathing life into me and in a matter of 20 hours after spiking a fever, he was gone. He died five months to the day – August 25, 2018 – after his dad passed.”
Those deaths alone would have shattered most people. But Allison carried an even heavier burden. In 2012, she struggled with a difficult pregnancy and prematurely gave birth to twins at 24 weeks gestation. Days after they were born, the babies died.
“When we lost the twins there was still hope,” Allison said. “Jamie and I still had each other. We had been married for 12 years at that point, so I knew him well. In many ways, the deaths of Dalton and Shelby drew us together as a couple. Our faith relationship grew, and we turned toward each other. More than anything, we grew up. It was the hardest thing we had ever experienced.”
There would be more difficult life experiences ahead, though. Travis brought back light and hope when he came along late in 2014. But just four months later, Jamie was diagnosed with colorectal cancer then Allison’s father passed away in late 2015 after a nine-year fight with two cancers.
Dealing with an infant and Jamie’s complicated initial surgery and treatment protocol and her father’s deterioration made for some tricky and hectic months. Still, Allison and Jamie had each other and hope. And that was enough, for a while. Gradually over the next three years, Jamie slowly lost his battle and on March 25, 2018 Travis lost his father.
Travis’ personality was big, bold and full of life for a young man his age.
Wounded, angry and struggling, Allison was all too familiar with the loss of a deep and passionate love. Travis was healthy, or so she thought, and raising her son provided more than enough purpose for her to cling to hope. As she slowly settled into her new normal as a widow raising a young son, what happened next to Allison sent her reeling.
“When I lost Travis, I was so alone,” Allison said. “It was different than before. There was no hope. There was no dream of more children. Honestly, I had to have some place for my anger to go.
“It still boggles my mind that this perfectly healthy four-year-old, who only six days before he passed, we had 50 people at his birthday party, was now gone.”
Travis’ personality was big, bold and full of life for a young man of his age. Even today Allison continues to find strength, inspiration and hope through Travis’ personality.
His big personality was evident in the way people were drawn to him, flocking to him on the Tee ball field, at church and in stores and restaurants. He would talk with anybody in the room. His full-of-life giggle was infectious and he wanted to share it with anybody and everybody, telling stories to make people laugh. He boldly shared his opinion on everything from food to clothes to cars. His curiosity for life already had him chasing dots to connect and his huge smile told you life was pure joy.
The rare genetic disorder that robbed Allison of all that personality and her foothold in life provided the catalyst to move forward. She became an expert on ICA, was troubled by its lack of detectability and driven by a calling to not let her love of Travis dull over the natural course of time.
Armed with a business degree from Baylor and a wealth of real-life work experience, but absent a real understanding of working full-time in service to others, Allison wanted to do something, anything to ensure others in the ICA world would not have to endure the road she’s traveled.
It takes courage to turn the thing that breaks your heart into an integral part of your day-to-day mission and purpose.
Allison founded T.E.A.M. 4 TRAVIS (Together Ending Asplenia Mortality) in 2019. The foundation is Travis’s legacy, ensuring the boy’s megawatt smile and exuberant love of life carry on forever. The work is difficult, rewarding and full of battles where hope and expectations are challenged by reality. Allison knew it wasn’t going to be easy. In so many ways, though, it was all she had.
“It gives me that connection to a family that was ripped away from me.”
“I need hope to have a reason to live,” she said. “This gives me hope that in some way — because of the work we are doing — one day in the future another child has a chance at life because of Travis. Because I continued to be his voice and refused to take no for an answer, perhaps the life of one child is saved.”
What she has discovered in the months since launching is the life shrapnel Allison carries has altered her perspective. She set out looking to help others. What she has discovered along the way is being a passionate rare-disease advocate is giving her the courage and strength to keep going.
“If I weren’t doing this, I’m not sure I’d be here. I really don’t know,” she said. “It gives me that connection to a family that was ripped away from me. I feel like working on the foundation is my only way of making some sense out of an utterly senseless tragedy.”
The future is cloudy for Allison and running a rare disease advocacy organization is full of highs and lows. Research is a process, not always a solution. The fact ICA is extremely rare presents its own unique set of challenges. Allison has a sense of urgency and commitment despite some of those around her having concerns about moving too fast.
Allison is working with researchers who discovered a genetic mutation, including an ICA young investigative researcher to advance science and treatments. Uplifting Athletes funds research grants in partnership with advocacy organizations like Allison’s through its Young Investigator Draft. Allison has a short-term goal of T.E.A.M. 4 TRAVIS being eligible for a Young Investigator Grant.
“Right now, I’m 100 percent committed,” Allison said. “This is my way to take that compounded grief and continue to be Travis’s mom. If I don’t get to mother him in the traditional way, I get to leave his legacy and mark on this world.
“I see signs of Travis everywhere. My son keeps showing up. That connection is very visible. And above all else, I fear nothing anymore.”