MANHATTAN, IL — Two Manhattan sisters suffering from the same, rare neurological condition will be treated to a night many teen girls—and heck, some adults—would envy.
Mollie and Madelyn Ronaldson, 16 and 13 years old, will have prime seats to see Taylor Swift take the stage at Soldier Field in June, thanks to a little help from a local nonprofit.
The Ronaldson sisters both have juvenile Sandhoff disease, a rare, inherited disease that progressively destroys nerve cells in the brain and spinal cord. It's known to be fatal by teenage years, said their mother Mandy Ronaldson, and they're making the most of their time with the girls. Both have lost essential abilities since their diagnoses. They are nonverbal now, and Madelyn can no longer walk.
But they still love Taylor Swift.
The girls were surprised recently with news that their family would see Swift in June, with prime floor seats. Nonprofit organization Project Fire Buddies secured the coveted tickets—which are hard to come by and pricey. It was a burst of brightness in what can often be a heartbreaking scenario, Ronaldson said.
Though Mollie presently seems stable, Madelyn's condition has declined rapidly in the last year, Ronaldson said.
"It’s huge," Ronaldson said, of the happiness the news brought the family. "Everything that they’ve done has brightened things for us—especially this past year, has been really hard with Madelyn, a lot of changes—changes in our home.
"There could be a lot of darkness, but we as a family try to focus on the blessings and the joy, and Project Fire Buddies is something we can look to as a blessing that the Lord has given us."
'There's no roadmap'
The Ronaldson girls were both born healthy, but at 5 and 3 years old, their parents started noticing complications.
"We started noticing some things," Ronaldson said, "we didn’t know what was going on."
Their active daughters—who were both walking and talking, taking dance classes, and playing soccer—slowly started to lose some of those abilities. Mollie had started to read, a skill she also lost. Doctor's appointments and tests initially were dead ends, leaving the family confused and frustrated at what was happening to their girls. At first, Ronaldson said, they didn't know the girls' symptoms were related. They turned to a specialist for answers.
"Once you go through all the doctors, and no one has an answer, you end up at genetics," Ronaldson said.
They learned through genetic testing that both Mandy and Jeff were carriers for Sandhoff disease. A child must inherit the defective gene from each parent in order for the condition to manifest. Those who carry only one copy of the mutated gene typically do not show signs and symptoms of the disorder.
Both girls were diagnosed with the condition in 2016.
Symptoms include progressive nervous system deterioration, problems initiating and controlling muscles and movement, early blindness, seizures and spasticity (non-voluntary and awkward movement), according to the National Institute of Neurological Disorders and Stroke.
Having lost the ability to feed themselves in addition to other essential skills, the girls require round-the-clock care, Ronaldson told Patch.
"With this disease, because it’s so rare, there’s no roadmap for us to follow," she said. "Even though both girls have the same thing, they’ve presented differently this whole time. There’s no cure at all, you just treat the symptoms. We trust in the Lord to guide our path."
Mollie and Madelyn Ronaldson pay a visit to the Manhattan Firehouse. Courtesy of Mandy Ronaldson.
'It's grueling watching things slip away from the girls'
With gradual and sometimes rapid decline for the girls and the limitations that follow, the family has found themselves grappling with ways to maintain their happiness.
Ronaldson heard of Project Fire Buddies, a volunteer-led effort by local fire departments to show support for children battling critical illness. Started in 2016, the Oak Forest-based organization expanded with a Manhattan chapter in August 2022. The group has chapters across the suburbs, including south suburban Oak Lawn, Palos, Orland Park, Tinley Park, Midlothian, Homewood, Lockport, Lemont, New Lenox, Evergreen Park, Frankfort and Country Club Hills.
"I just started hearing about it, I made the call because you have to do that yourself to get connected," Ronaldson said. "I wasn’t for sure what it would all entail.
"It has been such a huge blessing."
It can be difficult to find things for the girls to do, she said, but the group stepped up with ways to make them smile. They decorated the family's trees for Christmas and delivered gifts to the girls. They even arranged an in-home spa day for Mollie, Madelyn, Mandy and the girls' older sister Emma—complete with hair, makeup, nails and appearances from Disney princesses Elsa and Anna.
The group focuses on experiences for the family, rather than physical gifts.
"It's grueling to watch things slip away from the girls," Ronaldson said
"It is hard to buy gifts for the girls. They don’t really 'play' with anything, but they did very well ... but they also gave us family experiences.
"Memberships to the zoo, aquarium, Disney On Ice tickets for their birthday. That’s really important to us, to have those family experiences."
A night with Taylor Swift will be one for the books, Ronaldson said. The whole family are Swifties, she acknowledged—but especially Mollie.
Prior to becoming nonverbal, Mollie loved to sing, and Swift was her favorite.
"Mollie, she’s always been a singer," Ronaldson said. "She has a really beautiful voice, she can’t sing the words anymore, but if there is music on, she’s humming, and she’s humming in tune."
She'd sing Swift's music with her sister Emma, 18, who is a senior at Lincoln-Way West.
"Her and her big sister Emma—and Madelyn as well—when they were little, they would sing the 'Fearless' album, and that was Mollie’s favorite album," Ronaldson said.
"It’s been a bonding experience for Emma and Mollie. They don’t have a typical sister relationship, but when they listen to that, it’s a little more typical, and they enjoy that together. It’s a reminder of what Mollie used to love, and that it’s still in there. The Love Story song, you can see her mouthing the words, and it’s really special."
'She will adore it'
Ronaldson earlier in the year had purchased two tickets to the show, but the seats were in the nosebleed section, which might make it tough for the girls to enjoy. Mollie, in particular, would love the show.
"I wanted Mollie to be able to go, but seats being so far, she wouldn’t have been able to experience it," she said.
Project Fire Buddies swooped in.
New Lenox native, Peotone resident and Chapter President Dylan Ledvina learned of the girls' wish, and together with CEO Kurt DeGroot and with help from Manhattan business owner Kevin Schuster of Midtown Wine Bar, set things in motion. It was a proud moment for Ledvina, who didn't know exactly what he was getting himself into—in a good way—when he joined Project Fire Buddies
"It was really awesome getting those tickets for them," Ledvina said, "especially with how challenging it is to get them."
Manhattan firefighter Ledvina had followed Project Fire Buddies prior to his local chapter starting, and was eager to get involved.
"To me, it’s meant a lot," he said. "I absolutely love doing it. I have a little 16-month-old son, and another baby on the way, I’m very family-oriented."
Project Fire Buddies CEO Kurt DeGroot said helping families is the group's core mission.
"We look at every child, every fire buddy, like they’re our own family," DeGroot told Patch previously. "All of us on the team, try to put ourselves in their shoes.
"... In its roots, that’s what it’s all about. To create these memories for these families.
"We won’t cure cancer, but we’re going to create memories for these families, and give them an escape."
A New Lenox native and current Peotone resident, Ledvina welcomes the opportunity to be there for local families.
"Once I got filled in, the learning curve was over, we had an opportunity to do as much as possible," he told Patch. "We try to do as much as we possibly can."
The family was given four tickets for the show. They fear time with Madelyn might be dwindling, making it difficult for her to attend, but Ronaldson will leave the option open to her as the show nears.
But Mollie will go, and "she will adore it," Ronaldson said—though she won't understand what's happening until they're in their seats that night.
Their family is tight-knit, with older sister Emma and brother Aaron, 20. Ronaldson and her husband lean on each other as the impact of the condition on the girls continues.
"We are a good team," she said. "We have to have each other to be able to get through this."
Ronaldson shares the girls' journey each step of the way on social media. The Miracles for Mollie and Madelyn Facebook page is filled with photos of the sisters enjoying experiences like firehouse visits, a spa day, and time together.
Ronaldson wants the world to know her daughters.
"I love sharing my girls," Ronaldson said. "I think everyone should know them.
"Because they’re pretty special."
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