One morning in November 2022, 2-year-old Lucy Ballmaier woke up with puffy eyelids.
“My wife, Beth, and I thought it was an allergic reaction at first,” explained her dad, Rob. “But over the next week, it only got worse. We took her to urgent care, and they recommended Benadryl, which didn’t work. We had a regularly scheduled appointment with her pediatrician at Advocate Children’s Hospital – Park Ridge a few days later. She noticed swelling in Lucy’s legs and belly. Realizing it was something more serious, she sent us to the emergency department.”
Doctors recognized the swelling as edema, which they would later diagnose as being caused by nephrotic syndrome, a kidney disorder that causes the body to pass too much protein in the urine.
“Over the course of the next 12 days, Lucy underwent daily blood draws, tests and multiple IVs as doctors tried to get a handle on her situation. At one point, her syndrome made her so dehydrated that they were no longer able to extract blood or put in an IV. She had to receive a special type of catheter to continue treatment.”
The most common form of nephrotic syndrome is called minimal change disease and accounts for approximately 90% of cases. In those cases, high-dose steroids are the first line of treatment. Lucy initially responded well to steroids, but she soon relapsed.
“In January 2023, we went back into the hospital for eight more days. Lucy had a renal biopsy, which is the only way to diagnose her condition officially,” said Rob. “Doctors discovered that Lucy had scarring on two of her kidney filters and diagnosed her with focal global glomerulosclerosis. This type of nephrotic syndrome is extremely rare and tricky to treat.”
Since she was diagnosed, Lucy has relapsed at least four times while her doctors adjust her medications and treatments to find what will work best for her.
“There’s no playbook for this disease; there are no answers, but we keep hoping for the best. The hardest thing is all the ups and downs. We never know whether she’ll get better or worse.”
Support they didn’t know they needed
Through all the hospital stays, blood draws, tests, treatments, procedures and uncertainty, the Child Life, Creative Arts Therapies and Education team has been there to support Lucy and her family.
“The first time we were in the hospital, Beth and I were both in tears watching our little girl getting poked and prodded. It was traumatic for her and for us,” recalled Rob. “But the Child Life specialists were so comforting. They reassured us that we were doing everything right. Before we even knew we needed them, they were there for us.”
The child life specialists explained that Lucy could process her disease and hospital experiences through play.
“When she plays at home, all her stuffed animals and dolls are always in the hospital getting a procedure or having their blood pressure taken, which she calls ‘squeeze-squeeze.’ This past year has been really hard and scary for her, but it’s amazing how strong she’s been.”
The team provides many services to help children cope with being in the hospital. A music therapist sang songs with Lucy in her room. An art therapist supplied Lucy with arts, crafts and sticker books to distract her and help her feel more like a normal kid.
“When we were in the hospital in January, they greeted her with her favorite Peppa Pig toys and even treated her to an ice cream sundae. They are an amazing group of compassionate and supportive people. They’re angels taking care of these kids, and it’s a beautiful thing to see.”
Giving back
Rob, Beth and their family are grateful for the care Lucy is receiving, and they found an opportunity to give back in an unlikely place: a barber shop.
“The barber shop I go to hosts an event for patrons every year, and there’s always a philanthropic component,” shared Rob. “The owner knew what we were going through and decided to help raise funds in honor of Lucy.”
Rob and Beth also set up a DIY fundraising page and decided to donate all funds raised to Advocate Children’s Hospital’s Child Life program.
“I can’t tell you how overwhelmed I am by all the support so far. We started the page with no expectations, and we’ve raised more than $15,000 so far. That kind of thing helps restore your faith in humanity. We are so humbled by everyone’s generosity.”
How you can help
The Child Life, Creative Arts Therapies and Education program at Advocate Children’s Hospital is only possible because of the generosity of donors.
“The child life specialists go out of their way for sick children. They’re a group filled with loving and caring professionals,” said Rob. “No child should ever have to deal with chronic illness, but we’re grateful for this team and glad to support them as they care for these brave kids.”
To help kids like Lucy and their families cope with long hospital stays and difficult treatments, make a gift today.
If you are interested in starting your own fundraiser to support an Advocate hospital or program, visit our DIY fundraising site.