How Rays’ Pete and Lydia Fairbanks are trying to turn loss into something good

TORONTO — There was nothing Pete or Lydia Fairbanks could do.

The joy and excitement they initially had felt last fall over expecting a third child, a girl they named Ellis, had given way to uncertainties and fears, the product of an abnormal ultrasound and weeks of subsequent testing and waiting for results.

“Those weeks,” Lydia would share later in an online post, “were extremely difficult. The unknown of the diagnosis, difficulty receiving care, and the odds that were repeated to us every appointment made it difficult to see the light.”

At around the eight- to nine-week mark, they were told it was likely that Ellis had Turner Syndrome, a condition caused by a missing chromosome that experts estimate results in miscarriage 95 to 99% of the time.

“And then it’s a waiting game,” Pete said last week. “Either she makes it or she doesn’t.”

They lost Ellis at about 20 weeks gestation, shortly after returning to St. Petersburg from a Christmas trip to see family in St. Louis.

“It was a stressful three months,” Pete said. “Let me tell you.”

Time has helped heal only so much.

“(Lydia) went through it pretty good,” Pete said. “She’s a strong woman. We’re lucky to have her for our two kids. Yeah, she went through it. And I’m glad that we’ve been able to kind of move towards a better place.

“But it was it was a tough time. And that’s not something that is easy, especially (just) going through Mother’s Day.”

Raising awareness, funds

Through the pain and darkness, the Fairbanks found a way to do some good.

Lydia researched and then reached out to the Turner Syndrome Foundation. The nonprofit group provides broad-based programs to educate, support, help those afflicted by and encourage research into a condition that it says affects roughly one in about every 2,000 women — around 80,000 total in the United States — to some degree.

“Throughout this journey of diagnosis and loss, Peter and I have learned that there is a gap in the system,” Lydia wrote in the online post. “Reaching out to the Turner Syndrome Foundation taught us that there are many others experiencing the same battles.”

Pete said once Lydia suggested they should help, it was a “pretty easy” decision to get involved, which would require sharing their own loss publicly.

“This is our way of trying to make something good out of that,” he said. “We both thought it was the right thing to do. …

“I think it’s easier for a lot of people if they see somebody that’s in a more public eye that’s open about it. We have a forum to help other people. It’s a subject that nobody talks about, even though it is very, very prevalent.”

They worked out a multi-tiered plan to help raise awareness and funding for the group.

• Under the title “Strikeouts for Ellis,” the Fairbanks will donate $100 for each of Pete’s strikeouts this season (16 through Friday, around missed time for injuries) to the foundation, with the Rays Baseball Foundation matching the total.

• They created a fundraising page on the GiveButter.com platform with a goal of $50,000, featuring family pictures, including 4-year-old son Isak and 2-year-old daughter Lotte.

• In mid-July, they will run a two-week Rays Up for Turner Syndrome online auction featuring team memorabilia, experiences, players’ “favorite things” baskets and more.

• They will turn the July 28 game, when Pete’s bobblehead is the giveaway, into something of a Turner Syndrome day at Tropicana Field. The Rays are offering a group ticket price and donating $5 from each purchase; the TS foundation will send representatives and set up a table stacked with information.

Lydia said their own experiences made it clear there was a need to help others.

“We are motivated to help the Turner Syndrome Foundation bridge the gap between diagnosis and care,” she wrote. “This season, we vow to honor Ellis and other families who have experienced loss.”

Laura Fasciano, director and founding president of the Turner Syndrome Foundation, appreciates their situation and welcomes the help.

“It’s a sad story,” she said Friday from her New Jersey base. ‘They found us after losing their daughter. They said they wanted to memorialize her and try to raise money to support the cause, which we genuinely appreciate.

“Sadly, they are not alone. Most babies with Turner Syndrome will not make it to life. It’s only about 1 or 2% that will survive.”

A more prominent platform

Fasciano, who got involved with the cause years ago when her own daughter was diagnosed with TS, said they have tried different methods, partnerships and events — including one this past spring at the University of Tampa — to build support.

To have a prominent major-league player and his team helping with donations and awareness is significant.

“This is transformative giving for us, for our organization,” she said. “And the people in their community, St. Pete and Tampa, can come out. … Everywhere there are 2,000 women, one stands with Turner Syndrome. It’s just a fact.

The condition, which only affects females, is the product of one of the X sex chromosomes missing or being incomplete.

“It’s just a random thing,” said Dr. Melissa Crenshaw, medical director for the Clinical Genetics Program at Johns Hopkins All Children’s Hospital. “It’s not inherited. It’s not something that is caused by, like, medications or any outside factors.”

In unborn babies, the primary concerns are how the heart and kidneys are formed, Crenshaw said. Diagnosis of young children can be based on short height, among a long list of physical characteristics. While girls and young women with TS may need ongoing specialized medical care, Crenshaw said it “doesn’t generally” cause significant intellectual disability or limit motor development and they can go on to “lead full, healthy lives.”

With a push for earlier testing, including on unborn babies, Crenshaw said, “we’re finding that it’s more common than we might have known about, say, 10 years ago.”

As maniacally intense as Pete can be on the mound, and as gruff, acerbic and occasionally profane as he can be around the clubhouse, in other aspects of life he is admittedly nerdy, well read and thoughtful.

He has immersed himself into the details of Turner Syndrome, citing many of the same statistics as the experts, as well as with other “pregnancy issues,” such as infertility and miscarriages, he feels aren’t talked about enough.

“The way (Pete and Lydia) handled it was pretty impressive, and then to bring attention to (the issue),” said Rays pitching coach Kyle Snyder. “He is who he is. He’s genuinely a very, very good person. And this is a really important initiative for both of them given what they’ve gone through.”

For Pete and Lydia, their focus now is trying to use their experience to help others.

“Despite the darkness at times, we cherish those weeks because Ellis met milestones we were told she wouldn’t, and she taught us the importance of life and being present,” Lydia wrote. “Ellis was a fighter.”

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