Balloons still decorate the Clark home. Baby Anthony is so new, the helium hasn't seeped out of the "it's a boy" decor tethered in the living room.
"They were 'It's a girl' balloons until the day of," said first-time grandmother Angel Clark. "It was quite a day."
The day was April 12.
The family hadn't known that a baby was on the way that day. Angel's 15-year-old daughter, Chloe, was 37 weeks along.
Doctors had told them to expect a girl, which caused relief.
The baby's gender was more than personal preference for the Clarks. It could be an indication of how long Chloe's baby would live, and what the quality of life would be.
But Anthony was a surprise.
Within an hour of meeting her grandson, Angel emailed the geneticist. Within weeks, she had the diagnosis.
"We didn't get to just enjoy him," Angel said.
A new mourning
Anthony isn't the first in the family to receive a devastating medical diagnosis. He isn't the first boy with Hunter syndrome, a rare genetic disorder that affects appearance, motor skills and mental ability. About 500 people in the U.S. have it, almost all boys.
One is Jaxon, Angel's 7-year-old son, who is also Anthony's uncle.
Jaxon Clark loves his four-wheelers. He loves guitars and drums, anything loud. He's a thrower. Jaxon will reach into perfect strangers' pockets and pull out cash if they have it.
Long before his Make-A-Wish trip and being a beneficiary of Lake Wylie Children's Charity benefit concert, Jaxon was a boy on a field trip when Angel was pulled aside by another parent. That conversation was the first time Angel ever heard of Hunter syndrome.
The typical lifespan for a child with the syndrome is about 14 years. Boys tend to show signs at ages 2-3. Jaxon was 3 at the time. Boys tend to start deteriorating at 6-8 years.
"It's just waiting for a bomb to go off in the house," Angel said. "I figure since we're aware that we're in denial, it's OK."
Big sister Chloe has been with Jaxon his whole life, so she understood what the diagnosis meant for her son Anthony. She also knew why.
Hunter syndrome is passed from mother to child. Girls tend to be carriers, while boys suffer the symptoms.
"It was worse because I was like, wow, I was probably the reason that caused it," Chloe said.
For Angel, it was "three times the heartbreak." Jaxon and Anthony both have the syndrome, and Chloe got the news in her earliest days of motherhood.
"It's like being handed a death sentence," Angel said. "It's a borderline of mourning your child while they're alive."
Hope for some
It's not a good news, bad news situation. It's amazing news. A cure could be coming. Still it won't help Jaxon.
"We've got gene therapy at our fingertips," Angel said. "We just need the funding."
Jaxon is already too old for what Hunter syndrome parents hope will be a medical breakthrough.
Melissa Hogan knows more about the condition than any parent would want. Her son, Case, is among the 500 or so children nationwide with a diagnosis. Case is 11, and like Jaxon, too old for a clinical trial.
"If a child has already deteriorated so much, you can't really test them to see if the drug is stabilizing their brain," said Hogan, president of Tennessee-based Project Alive. "What the disease does is it causes brain damage."
Hogan is one of four moms who started Project Alive in 2014. They heard about gene therapy and reached out to researchers for information. They got the good, and bad.
"A group of parents saw the science emerging for a potential cure for the disease," Hogan said. "We realized this is going to take not a little bit of money. This is going to take millions of dollars."
Last year, the group raised more than $1 million to fund pre-clinical research. They have a hospital, and federal approval to start trials. They have a drug they believe will work.
"It's a virus that has had the bad parts of the virus taken out and corrected genetic material has been put in there," Hogan said. "It's like science fiction."
Testing could begin by July. But the group needs another $1.5 million. That amount would fund a trial for nine children.
"As hard as we're all working, no one's child is guaranteed to get a spot or to have a leg up,” Hogan said. “We’re just doing what we can, and know that it wouldn't happen without the hard work of all these families."
Because Hunter syndrome is considered an "ultra rare" condition, drug companies are not lining up to create treatments. There aren’t major foundations writing off the amount needed for research. There isn’t money or philanthropic appeal, moms of Hunter syndrome boys say.
"We're just parents, doing the best we can to save these kids," Hogan said. "If we didn't start this research, it wasn't going to happen."
So they did, even while many parents knew the lives they may save won't be their own children.
"If people really knew how close we are to something that could save these kids, if people knew how little money it was, we feel like they would want to help," Hogan said.
A waiting game
Jaxon goes to Charlotte every Wednesday for three hours of enzyme treatment. Once insurance kicks in for Anthony, he'll get his own treatment. The therapy won't cure either boy, but it slows the symptoms.
"It won't fix anything that's already damaged," Angel said. "It's a waiting game for kids that don't have a lot of time to wait."
Anthony has more time than Jaxon. Some Hunter syndrome sufferers can go years undiagnosed.
But because Jaxon had already been diagnosed, the Clarks knew to immediately test Anthony. And the against-the-odds clinical trial for just nine patients might give Anthony as good a shot as anyone because of his age and early diagnosis.
".... With Jaxon it's, 'There's no hope,'" Chloe said. "But with (Anthony), there might be."
Angel said she wonders why there isn't a cure already. Often parents know little of Hunters syndrome until it's too late. All they can do is pump expensive drugs into their children to slow symptoms.
"They're making a million dollars on my kid," Angel said. "Who's going to give that up for a cure? It sounds awful, but it's true."
But the Clarks aren't a family to wallow. Chloe's first weeks of being a mom included countless doctor visits while keeping up with school as a sophomore at Clover High School. She doesn't wake Angel for Anthony's middle-of-the-night feedings.
Count perspective among the gifts that came with Jaxon.
"Jaxon kind of fixed us as far as priorities," Angel said.
Those priorities include going to the beach in the summer, watching fireworks on July 4, seeing motorcycles. Regular as treatments are, they take a back seat to family time.
"I tell them," Angel said of the doctors, "because you told me I only had a few years with him, we're going to play."
Chloe expects she'll be the same way with Anthony. Chloe understands doctors' perspective, wanting precise and scheduled treatment. She hopes they'll understand her view.
"They have more time to make memories with their kids than we do," Chloe said.
Jaxon can't speak much anymore, but he doesn't have to when it comes to Anthony. Jaxon always wants someone to hold Anthony. Jaxon never wants Anthony to cry.
Because of the awareness Jaxon brought, there may well come a time when Anthony won't have to.