TCU standout on PGA Tour uses daughter’s story to help others facing rare genetic condition
Like any competitor, Hayden Springer dreams of success as he embarks on the Professional Golf Association Tour. However, he would give it all up if his young daughter Sage could have survived the genetic condition trisomy 18.
Sage died in November. Hayden and his wife Emma of Justin are now helping other families facing the challenge of trisomy conditions through their nonprofit organization Extra to Love.
“Our sweet and precious Sage went to be with her creator just over a month after her third birthday. Her loss was unexpected,” Emma said. “We have a renewed sense of importance to support families like ours, as we are eternally grateful for the time we got with her.
“She truly exuded joy and made the world a better place. To know her was to adore her.”
Emma cited a passage from a CS Lewis work, which states, “Her absence is like the sky, spread over everything.”
Then, she added, “But even more true is my adaptation of the quote for Sage, ‘Her JOY is like the sky, spread over everything.’ Her legacy of joy will live on through our mission and we will carry her every single day.”
The ultimate mission is to someday eradicate trisomy conditions. In the meantime, the Springers are doing all they can to make life easier for families experiencing what they did.
The term “trisomy” is used to describe the presence of an extra chromosome — or three instead of the usual pair. For example, trisomy 21, the most common form, also known as Down syndrome, occurs when a baby is born with three No. 21 chromosomes.
In trisomy 18, Sage’s condition, there are three copies of chromosome No. 18 in every cell of the body. According to the National Institute of Health, it occurs in about one in every 5,000 births, with the incidence being higher in the prenatal period with a high percentage of prenatal deaths.
About 60% of trisomy 18 children die within a couple months after birth and more than 95% within a year of being born.
Fight from the start
The NIH reports that, because of the high unlikelihood of survival, a newborn with trisomy 18 should be considered a patient with a hopeless outlook who ought not to be subjected to invasive procedures.
Such was the uphill task Emma and Hayden faced when trying to get help for Sage.
“Sage was denied the medical care she needed from birth due to her trisomy diagnosis,” Emma said. “Sadly, many doctors do not feel that children with these diagnoses are candidates for surgery due to the nature of their limited life expectancy and disability. Unfortunately there is a self-fulfilling prophecy cycle in which care is denied, thus shortening the life expectancy, due to the preconceived notion that their life will be short.”
The Springers refused to surrender to such thinking, however. Sage did survive birth, and the life expectancy of one to three days they were told. They searched every corner of the medical profession they could think of, being denied over and over, before finally finding help a few hours down the road at Dell Children’s Medical Center in Austin.
Changing expectations
Emma said that as life expectancy increases, necessary interventions are offered more commonly, which, in turn, further increases life expectancy. She noted the upward trend of Down syndrome, which brings hope.
According to the Centers for Disease Control and Prevention, the life expectancy of people with Down syndrome increased dramatically over the past 70 plus years.
In 1960, on average, persons with Down syndrome lived to be about 10 years old. In 2007, on average, they lived to be about 47.
Today, studies from the Global Down syndrome Foundation show the average life expectancy to be around 60.
“I frequently tell people that trisomy 18 and trisomy 13 were discovered approximately 100 years after trisomy 21, so we are about 100 years behind them in advocacy,” Emma said. “Just 50 years ago, the norm for Down syndrome was institutionalization and a life expectancy of about 20 years, which was double the life expectancy from 50 years prior to that.”
Emma said the continued expansion in life expectancy for those with Down syndrome is based in large part on the willingness to meet their needs. She believes the same can happen for other trisomy patients.
Extra To Love foundation
Emma and Hayden started Extra To Love, originally the Springer Family Foundation, in September of 2021, inspired by their own journey with Sage. They serve families from across the country.
“We learned through connecting with other parents that our experience seemed to be the rule, rather than the exception. We wanted to support other families that, like us, wanted to advocate for their child’s right to non-biased care,” said Emma, who is also the executive director.
They changed the foundation’s name to Extra To Love in June 2023. As more people joined the team, she said it began to feel like it was something bigger than their family.
“We wanted a name that didn’t put the attention on the founders, but rather on the cause. We chose Extra To Love as we felt that it encompassed our hearts for our community — we believe that extra chromosomes are Extra To Love,” she said.
As Sage grew, Emma said she and Hayden recognized that there was a growing amount of support for pregnancy and early infancy, but there was a gap in organizations offering support to families raising a child with this diagnosis. So they expanded the foundation’s financial assistance to include things such as adaptive aids — specialized seating, for example — therapies, minor home modification, such as installation of a wheelchair ramp and more.
Getting the word out
Hayden was a standout golfer at TCU from 2017-19 and won the Big 12 Conference championship in 2019. After leading the PGA Canada Tour points list in 2023, he earned his PGA Tour card for the U.S. in December.
He plans to use his newfound status for more than trying to win tournaments.
“Having a daughter with this diagnosis and walking this journey with her gave me a lot of perspective. Golf is important and I care a lot about it, but at the end of the day, I know that my family and my faith are what really matters,” Hayden said.
“I’m really excited that my PGA Tour card means I’m going to have a lot of opportunities to tell Sage’s story and other kids just like her. I look forward to spreading the word about ETL’s mission and build support for the cause.”
Hayden’s mother, Jennifer Springer, was among the many who had never, in fact, heard of trisomy 18 before learning about it through her granddaughter.
“There are families we have been able to help through the foundation that we never would have known anything about if it weren’t for Sage,” said Jennifer, who is the foundation’s director of operations. “She opened our eyes to see needs we didn’t even know anything about.”
Finding more help
Emma noted that most states have programs to assist families of people with medical complexities. Sage benefited from a program in Texas called Medically Dependent Children’s Program, she said.
“Our out-of-pocket costs after she became a part of this program were next to none. The most costly part of our journey was our choice to travel for her care,” she said. “I had to take a leave of absence from work, and Hayden took time off as well. This is what inspired our organization.”
The foundation assists families with the cost of gas or airfare, rental car if needed, groceries or meals, accommodations and more.
“We believe that when it comes to fighting for your child’s life, finances should never be the thing to stop you,” Emma said. “Extra To Love seeks to lift as much financial burden off of families that choose to travel for care as possible.”
Sharing her legacy
The Springers’ second child, Annie Claire, was born just two weeks after Sage’s second birthday. Emma said their love for each other was incredibly apparent.
For example, Sage could always be seen smiling at her sister’s silly antics, and Annie’s curiosity for Sage’s medical supplies was endearing.
“Annie never knew a different version of her sister and accepted her just as she was,” Emma said. “Of course, at just 14 months old, Annie does not understand anything about trisomy 18 or the loss of her sister, but Sage will always be a very present part of our family even though she is not physically here.
“Annie loves our friends who also have trisomy diagnoses and it will be a very normal part of her life as she grows, as well as any of our other children. We will always share with them, in age appropriate ways, their sister’s story and our mission to carry on her legacy.”
Jennifer said she likes to think of Sage now being able to do all the things in Heaven she couldn’t do on earth.
“Sage is getting to do all the things her earthly body wouldn’t allow her to do here like walk, talk, sing, jump, run,” Jennifer said. “We know she is playing at the feet of Jesus and there were lots of other kids with trisomy there to greet her when she arrived.”
Funding
The foundation gets funding from donors, and Emma said the number of supporters has steadily grown. In 2023 they had their first silent auction and will be hosting another in the summer of 2024.
They are looking forward to their upcoming fundraising dinner titled An Extraordinary Evening 2024, which will be hosted at the Amon Carter Center at Lena Pope Home in Fort Worth on March 1. Tickets can be purchased at Extratolove.org/tickets. Interested sponsors can reach out to the foundation at info@extratolove.org.
This story was originally published January 24, 2024 at 6:00 AM.