Family of 10-Year-Old Boy with Deadly Disease Races Against Time to Fund Trial for Other Kids: 'We're Not Giving Up'
This article originally appeared on People
The mom of a 10-year-old who has an extremely rare and deadly disease is doing everything in her power to fund a $2.5 million clinical trial that she believes could help other children with the same condition.
Case Hogan of Nashville, Tennessee, has Hunter syndrome, a rare and fatal genetic disorder that affects 400-500 people (mostly males) in the U.S. Most children are diagnosed between 18 months old and 4 years old, and the life expectancy of most individuals is 10 to 20 years. By the time most kids who have the disorder reach Case's age, they're already in need of a feeding tube, wheelchair and require 24-hour care.
But when Case was 3 years old, he and 62 other children with the disorder were accepted into an experimental drug trial that has prolonged many of Case's symptoms. While he has special needs and behavioral issues, his mom says he's one of the lucky ones.
"The drug has bought him more time," Melissa Hogan, 44, tells PEOPLE. "But we know it won't last."
After Case's diagnosis in 2009, Melissa began blogging about the disease and became an advocate for her son and other children.
"After Case got into the trial I had the bandwidth to do something — unlike many parents who have children that are really impacted by the disease. Most of their time is providing nursing care for their kid," she says.
When she found out about gene therapies that were coming into fruition for other similar rare diseases, she wondered what could be done for children with Hunter syndrome.
Melissa and three other moms of children affected by the disease came together in late 2012 and started to work with researchers to make it happen. But they soon faced a roadblock when they realized the cost to actually create and distribute the experimental drug to nine children was $2.5 million.
So Melissa started the nonprofit organization, Project Alive, to fund research and provide resources to those with Hunter syndrome. Through video campaigns, Project Alive connects families around the country who have a child with the disease.
"We thought seeing the faces of these families would move people to help," says Melissa, who also has two older sons with her husband Chris. "It really shows how we're just another family, but this really bad thing happened to us."
So far they've raised $650,000 and need at least another $100,000 by November in order to start the trial.
"We don't have much time," she says, "but we're not giving up."
One of the hardest things for Melissa is knowing that even if they're able to move forward with the trial, her son wouldn't qualify for it.
"That's a personal struggle for my family," she says. "We're pushing so hard and he wouldn't even be part of it because he had the experimental drugs years ago."
Yet she's still incredibly thankful she was given that chance because it's given her more days with Case.
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"If he wasn't part of the first one, he'd be in the end stages of the disease right now," she says. "Now I'm focused on the kids that don't have anything and didn't get into the first one. I want to provide hope to other families and give them a chance to be with their child for longer."
"Time is precious," she says. "Even someone who seems to be doing well [with the disease] could go to bed and not wake up."
So Melissa makes sure that she cherishes every night when she tucks Case into bed.
"Of course there is no assurance for any of us, but particularly for him," she says. "I can't fluff it off and just say goodnight."
As her other children get older, they continue to have a greater understanding that while Case might not look or act very sick, his days are limited.
"My middle son did Hunter syndrome at his science fair project this past spring," she says. "They know what position he's in."
They make sure to laugh, play and enjoy family time as much as they can.
"Case and these children don't deserve this," she says. "They deserve to live."