25 Year All Stars: Meet Madigan
In 2015, PHS is excited to be celebrating 25 years of bringing patients home to receive care, where they can be with their families and grow in a comfortable environment. To celebrate the amazing journeys our patients have been on, we’re going to be highlighting their stories each month on the blog through the 25 Year All-Star series.
When Madigan was adopted from China at 13 months old, her mom, Pat, remembers how full of life she was.
“She was the light of everybody’s life in China because she was very verbal, spoke two languages, and was giggling and laughing all the time,” remembers Pat.
Today at 18 years old, Madigan still has that infectious smile, a light in her eyes and the ability to invoke fun everywhere she goes – and has added a few more accessories over the years.
A Midwest move
Shortly after Pat arrived home in Cleveland, Ohio with Madigan and Mikaylah, who was also adopted from China, she began to notice that Madigan was walking differently and began having tremors.
“I couldn’t figure out what the cause was, and luckily a doctor we were seeing in Ohio had a suspicion based on a case she had seen when she was a resident in Minnesota,” said Pat.
Madigan’s doctor conducted the test and sent it off for analysis, suspecting she had a metabolic storage and autoimmune disease called metachromatic leukodystrophy, which affects approximately 1 in 400,000 children. Having encountered this diagnosis in Minnesota during her residency, Madigan’s doctor told Pat about a physician who had worked with children affected by the disease and recommended they consider moving here for her care.
“So I lived in the Ronald McDonald House for a year, and we finally decided we would permanently live here – I went back to Ohio, sold the house, and we came here for good,” mentioned Pat.
One of a kind
When Madigan had a trach placed at 10 years old, PHS came on board to provide respiratory therapy and durable medical equipment for her. When home care nursing began in 2011, Pat knew she wanted her daughter to have nurses from PHS taking care of her each day and began to receive that service as well.
“Deciding to have Madigan trached was one of the hardest things I’ve done,” remembered Pat. “I didn’t know any other children with metachromatic leukodystrophy that had a trach, and I still don’t. She’s supposedly the oldest living child with this disease and this onset.”
Today, Madigan and her family live a full life, thanks in part to the care she receives from her PHS nurses, dietitian, and respiratory therapist.
Pranks and pajama parties
Despite Madigan’s complex medical needs, there is no lack of laughter and fun in their household – Pat always has another adventure up her sleeve for her and her daughters, whether it’s spending the night at a hotel in Chanhassen, boating on Lake Minnetonka, pranking neighbors by writing on their driveway in sidewalk chalk, or hosting a pajama party with friends.
“When Madigan was in kindergarten, we designed t-shirts that said “Maddie’s Mob” and had a fish bowl in the classroom, and every Thursday Maddie’s classmates could put their name into the bowl if they wanted to come to our house the next night,” mentioned Pat. “So anybody could come over, and then Friday night they could have their parents come to our house, and we’d have pizza, watch movies, and hang out. We did this through elementary school, and kids still come up to her and tell her they have her “Maddie’s Mob” shirt.”
Pat says that was her way of helping kids to be comfortable around kids like Madigan, where they can see her as just another one of the classmates. Today, if Pat notices kids looking at Maddie, she will invite them to come over and explain what accessories she has, showing them “normal” kid things like her painted nails too.
“It’s a good opportunity to help kids understand that Madigan is just another person, with some extra stuff,” she said.
Madigan hits YouTube
A few years ago, Maddie’s bright personality hit the digital world, thanks to a song written by a member at the church their family attends. Maddie’s Song has been seen by over 2,000 people and counting! Check it out below:
Thanks to comprehensive care from Madigan’s clinic-based and home-based providers, she has stayed healthy, happy, and at home while managing a progressive neurological disease. Thanks to the efforts Pat has put into advocating for equal pay rates for nurses, legislators have become more knowledgeable about the level of care home care nurses are providing each day. And thanks to the community that supports her, Madigan has copious amounts of love, caring and laughter in her life each and every day.
Originally published: August 7, 2015