A Waukesha County man was in the audience Tuesday night for President Donald Trump's address to Congress. Tim Wendler was invited by Senator Ron Johnson, and is leading the push for a new law. That measure would be passed in honor of his wife, who died from ALS, or Lou Gehrig's Disease.
Wendler has another strong fighter in his corner, his oldest daughter, Tealyn. At just 13-years-old, she wants to make sure something positive comes from the pain of losing her mom.
"I cry when I realize she's not going to be there for my wedding, or when I buy my first pair of high heels," Tealyn says.
But the tears only strengthen Tealyn's resolve to keep fighting for "right-to-try" legislation that would help terminally ill patients get experimental drugs and treatments.
"It's unacceptable to let more people go through the pain that I went through, that my whole family went through," she says.
Tealyn's mom, Trickett, died from ALS two years ago. Trickett's father also died from it. Right now there is now cure, no real treatment, and no explanation as to exactly what causes the disease.
"It just came in like a hurricane, and it destroyed everything," Tealyn says.
Tealyn misses the little things most -- laughing with her mom, and just being home with her.
"She had a really different sense of humor, but I always understood what she was laughing about," Tealyn says. "We used to dance a lot too. I used to say that knowing her so well was a blessing and a curse because there's so much more to miss for me. I hope I never have to go through anything harder than losing her."
Tealyn now tries to be even stronger for her younger brother and sister. And her dad, who's now raising three kids on his own.
"We're all hurting, and we're all learning together," Tealyn says.
Trickett battled ALS until the very end. She wanted more time with her family, and traveled the country looking for clinical trials. But was turned down from all of them.
So she planned ahead, for all the things she would miss with her kids.
"She set up presents for us, like on our birthdays and for christmas every year, until we're like 20 years old," Tealyn says. "She even left wedding presents and gifts for her grandchildren. She knew this wasn't something you could really come back from."
Now, there's no going back for Tealyn. She speaks at congressional hearings, and meets with state and federal leaders. She recently met with Vice President Mike Pence at the White House. Her message is strong:
"Don't we matter?" she asks. "Don't the people with sicknesses matter. Don't their families matter?"
And she knows just where that message comes from.
"My mom's voice now comes through me and my dad," she says. "I feel her presence all the time. It makes me want to keep going, and keep doing stuff like this, so people know."
The piece of legislation is called the "Trickett Wendler Right to Act." It has the backing of many conservative and liberal lawmakers in Wisconsin. It would allow patients and their doctors to try and find treatments that have not received full approval from the FDA.
The law would have to pass through different states, and go through series of steps before making it to Congress. Vice President Pence pledged his support. If President Trump eventually approves, the Wendler family will be there at the White House as it goes into law.
Advocates say it could buy families more time with their terminally ill loved ones, and could help find cures faster. But critics argue unproven treatments are not the answer. The Wisconsin Medical Society worries it could disrupt the existing system of clinical trials that help determine whether drugs work safely and effectively for a broader group of patients.
The law does not require a drug company or a doctor to grant a patient's request for experimental treatment. There are also questions on how health insurance companies would handle the treatments, especially if the experimental treatment worsens their condition and causes more medical bills.
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