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Raising HD awareness personal for Smith, wife

Couple promoting foundation to combat incurable Huntington's disease that runs in Astros pitcher's family
February 18, 2019

WEST PALM BEACH, Fla. -- They wrestled with the decision to start a family for five years. It's something most young couples discuss at some point. Timing is important, and considering their busy lives, even more so for Astros pitcher Joe Smith and his wife, TV sports reporter Allie LaForce.The

WEST PALM BEACH, Fla. -- They wrestled with the decision to start a family for five years. It's something most young couples discuss at some point. Timing is important, and considering their busy lives, even more so for Astros pitcher Joe Smith and his wife, TV sports reporter Allie LaForce.
The issue facing the couple is far more momentous than most others have to deal with -- one that's a matter of life and death. Smith's mother, Lee, has Huntington's disease, a fatal neurological disorder with no cure. She inherited it from her mother, who died from it in 2012. There's a 50-50 chance Smith has the disease, as well, which means there's the same chance any children they bear will carry the disease.
That's why the power couple has been trying to spread the word about their foundation and HelpCureHD.org, which aims to help improve the quality of life for those affected by Huntington's disease by contributing financial, emotional and mental support while trying to find a cure.

"She knew about it, obviously, before we got married and knew where my mom was and where my mom was going, and knew I had a 50-50 chance," Smith said. "One of the biggest things about the disease is the way it affects families. It's not just the person that's going through it. It's the whole family."
Huntington's disease causes the progressive breakdown of nerve cells in the brain. It deteriorates a person's physical and mental abilities during their prime working years, between 30-50 years old. Smith's mother, Lee, was diagnosed in 2012, and three years ago went into a nursing home at 59 years old.
Smith called it "a disgusting disease."
"It's a battle every day, and I can't even put into words, until you're around it every day, not only do you see what it does to the person infected, but the whole family," Smith said. "Everybody worries about my mom, but you look at my dad and the pain and agony he's suffering. They're supposed to be in their golden years and traveling around and watching baseball, or going to see my sister and the grandkids. He's trying to help her as much as he can."
There are tests that could predict whether a person will have the disease, but Smith and his sister would rather not know. He's not sure how a positive result would affect him mentally.
Smith and LaForce aren't letting the disease stop their dream of starting a family, though. They're using in vitro fertilization along with genetic testing that will allow only healthy embryos to be implanted. This would guarantee their child would be HD-free, stopping the disease from spreading down generations.
LaForce admittedly publicly Monday the first try at pre-implantation genetic diagnosis in vitro fertilization didn't work out. The process can cost as much as $30,000-$40,000 per attempt, which Smith and LaForce can afford. They know most couples seeking to have HD-free children can't.
"The point of going public is making people feel like they're not alone, that this isn't easy, it's a not a perfect science and that it's expensive," LaForce said. "It's really important we're going through it, so we can relate to the people through our foundation and HelpCureHD.com that are going through this, that we can relate to them and know the expenses of it."
The pair have raised more than a million dollars through their foundation and CureMD to help families with the cost of the PGD-IVF tests. They've partnered with the Houston Fertility Institute and Cleveland Clinic in Ohio in pledging discounts for those couples who are referred by the charity.
"Watching my mom every day and going into a nursing home and getting worse, for me I understand the moral debate [of having a child]," Smith said. "We thought about it for a long time. We've prayed about it. … If I can take this out of our family line, it's a no-brainer."

Brian McTaggart has covered the Astros since 2004, and for MLB.com since 2009. Follow @brianmctaggart on Twitter.