Smith, LaForce prepare for next step in fight with HuntingtonĄ¯s
Do-Hyoung Park
@dohyoungparkNORTH PORT, Fla. -- Something inside Joe Smith keeps making him feel like he's in the right place at the right time now.
The veteran right-hander's in-laws are really into numbers -- reading into them, seeing them as signs, and he's not talking about the 83's that popped up on the radar gun when he first took the mound for the Twins on Saturday against the Braves after signing a one-year deal last week.
"DonĄ¯t get all depressed, OK?" he joked. "[The velocity is] coming. I promise."
He's thinking more about the number 41 -- the number of the U.S. route that runs through Fort Myers, near the hospital where he and wife Allie will be on Monday. He's thinking about 44, which was involved in one of the relevant numbers for the appointment -- the number of his grandmother's longtime school bus route. He's in Lee County, which carries the same name as his late mother, Lee Smith. When he found a dinner place on Yelp to eat with his in-laws the other night, it just happened to be the place where his father-in-law's mother would spend time every Thursday night before she passed away.
Smith is hoping all that signals he's in the right place at the right time, at last, to carry forward that family's story -- without carrying forward the family's incurable genetic condition.
On Monday, Smith and his wife, basketball reporter Allie LaForce, will find out if their unborn baby has a heartbeat, the next major step of a journey to conceive their first child through pre-implantation genetic testing and in-vitro fertilization (PGT-IVF) to make sure that any such children will not carry the gene for Huntington's disease, a neurodegenerative disorder that claimed the lives of both Smith's grandmother and mother.
"Come Monday, it'll either be a good thing or a bad thing," Smith said matter-of-factly. "You know, if it's supposed to work, it'll work. We'll see. No matter how much science is behind it, everything doesn't always pan out."
There's a 50 percent chance that the gene causing Huntington's will be passed from an affected parent to the child. Smith doesn't know if he carries the gene; he doesn't wish to be tested. All he and LaForce know is that they'll do whatever they can to eliminate Huntington's from their own genetic lineage, leading to this winding and costly process through PGT-IVF, a previous cycle of which ended in a miscarriage last year.
Smith and LaForce have shared every detail of this very personal journey with the public and the press, with LaForce documenting the steps of her journey through her social media while both work to raise awareness and money for other families in similar situations through their foundation, HelpCureHD.
They don't want to hide anything. They update their blog detailing their journey every day. For couples going through PGT-IVF to ensure they won't pass on genetic conditions and others going through fertility treatments, Smith and LaForce want them to know they're not alone.
"A lot of people don't share that information, and it's kind of sad, because your friends or your family, they're supposed to be here to support you," Smith said. "That's what she tries to do, just, like uplift people and get the story out there. She's like, 'If I'm going to share the good, I've got to share the bad.'"
"I just didn't feel right not sharing, because I don't want women to think that something's wrong with them when there's nothing wrong with them," LaForce said on a CBS Morning segment earlier this week. "We're all going through our own personal journey. We all have struggles."
Some of those struggles for families are financial. Smith and LaForce, being a prominent athlete and reporter, are in position to pay the $65,000 to $70,000, per Smith's estimate, that their IVF journey has cost them so far. He estimates that the PGT-IVF could cost an average family around $40,000. HelpCureHD provides grants for such families to welcome children without Huntington's to the world.
The foundation's website lists 16 such babies who have already been born with Smith's and LaForce's help, and Smith said Saturday that the number stands at 17. It also states that they hope to welcome more than 70 Huntington's-free children through the grant program from 2021-22. The deadline to apply for that grant cycle was on March 1, though additional applicants will be considered for the next grant cycle, according to the website.
"In doing this and having children born from this, thatĄ¯s 17 family lines that itĄ¯s gone from," Smith said. "They donĄ¯t have to worry about it. ItĄ¯s been pretty fun. We switched to that in 2018 once we took a tour of the Cleveland Clinic and found out all this stuff was possible. ItĄ¯s been fast and growing quick."
Smith and LaForce held a gala at Union Station at Minute Maid Park in Houston last August that raised $480,000 for the cause, and plan to hold another gala this summer on an off-day for the Twins. He mentioned that he might reach out to the Mayo Clinic, based in Rochester, Minn., to see if there's collaboration to be had there.
Amid all of those success stories, Smith and LaForce are still working toward their own. He's hoping that all those numbers and signs can't be a coincidence ahead of Monday. Right place, right time.
"I took that as a pretty good sign," Smith said. "So, you know, last time, she was on bed rest for two weeks, and this time, she's good. She's out covering the [NCAA basketball] tournament and coming in tomorrow. I'm feeling pretty confident."