TAWAS CITY – While the diagnosis of an uncommon disease can be devastating, those going through the ordeal have a much better shot at success when the problem is detected early.
This is the case for Arianna Rose Kellar-Miller, 4, Tawas City, who recently learned that she has the rare autoimmune disease juvenile dermatomyositis (JDM).
Her mother, KC Kellar, and father, Matthew Miller, acknowledge that the young girl has a long road ahead of her. However, they note that things could have been much worse if not for the quick response of Tana McKulsky, a family nurse practitioner for Ascension St. Joseph Hospital Pediatrics.
When sharing the details of her daughter’s situation, Kellar first points out that living in a smaller community has its benefits, to say the least. “One of them being your Pediatrics office being full of people you know and grew up with.”
Kellar says that on Jan. 8, she took her daughter – who was just shy of 4 years old at the time – to see McKulsky, who they usually meet with whenever they go to Ascension Pediatrics in Tawas City.
Kellar attended school with McKulsky’s children, one of whom she graduated with.
“So, knowing her in that sense I think could only help with the news we got that day,” she says.
“Arianna had developed a rash on her thighs and it had begun to spread to her hands and face,” Kellar describes. “At first, it seemed like maybe dry skin or maybe she was having a reaction to a type of fabric. We always use free and clear laundry soaps and softeners, so I was puzzled by what could have brought this on.”
She says that after a week of her daughter’s condition not improving with home remedies, and things clearly getting uncomfortable for the child, she called Ascension and they squeezed Kellar-Miller in that same morning.
“Tana came into the room and made small talk with Arianna. She hadn’t seen her since before COVID started, at her last round of vaccines. Arianna has always been so healthy!” Kellar recalls.
“Tana took a look at her rash, her hands especially, as around her joints and around the beds of her fingernails were very inflamed and tender to the touch,” Kellar went on. “Tana came back into the room with a book and started to explain to me about something called ‘JDM.’”
According to Kellar, JDM is an incredibly rare disease – impacting about two or three children per every one million – which affects the muscles and skin, in the forms of weakness and rash.
As McKulsky was discussing her suspicions, they talked about how Kellar-Miller suddenly wanted to start taking naps during the day, which she hadn’t done since she was about 18 months old.
“We started talking about little things – or things that we at least had thought were nothing,” Kellar says. “Tana then told me she was referring Arianna to University of Michigan, to see a dermatologist and a specialist for what she believed firmly Arianna had.”
It took three weeks, but they got in and Kellar says the family’s fears were confirmed on Jan. 29, when Kellar-Miller was officially diagnosed with JDM.
Her rash had only gotten worse at that point, and the youngster’s tiredness and lack of energy was greatly concerning to her parents.
Thankfully, Kellar notes that the team at C.S. Mott Children’s Hospital, which is affiliated with the university, went to work fast. “Our little girl received her first infusion treatment that very day, to start and battle her own immune system so it stops attacking her muscles and skin. It was by far the hardest day of her Dad and I’s life.”
Kellar says this is when it all came together, and they had to accept that their daughter has a fight on her hands to try and be the “one in three.” She was referencing the one out of every three children who have JDM and go into remission after a couple years of aggressive treatment.
“Our odds are pretty good. This was caught very early in age and that isn’t always the case,” Kellar continued. “Some children and families don’t learn about this until they have lost enough muscle to lose the ability to walk, or even swallow food properly.”
She says that her daughter’s situation was caught so early because of McKulsky. The specialist Kellar-Miller is now seeing at the Mott facility praised Ascension Pediatrics and McKulsky, as well.
“She couldn’t believe that she caught it and knew instantly what she could be dealing with. She told us flat out, that Tana catching this so early is going to be the game changer for Arianna,” Kellar states. “She’s hopeful that Arianna has a good chance at being that ‘one in three,’ and that is because of Tana and Ascension Pediatrics. Without them, we could have ended up with a very, very sick little girl.”
Going back to the Jan. 8 Ascension visit, Kellar says that, with McKulsky sitting next to her, their lives changed that day.
“She looked at me, as I’m clearly trying to take all this in, and says, ‘I know this wasn’t what you expected to hear today when you brought her in,’” Kellar remembers. “No, it sure wasn’t, but, we can’t thank Tana enough for what she did that day. For it being caught so early on, and giving Arianna a real chance to battle this disease. Tana’s knowledge of this very rare disease gave us this chance.”
Kellar expressed her gratitude to McKulsky and the Ascension Pediatrics staff for being there, for being knowledgeable and for striving to give the children in this community the doctors and nurses they deserve. “I know Arianna and the entire Kellar-Miller family will never forget it.”
She added that all of this has been a whirlwind. But she and Miller are also grateful for their employers, who have been working with the couple to ensure that they can both attend their daughter’s weekly treatments in Ann Arbor. “There is still a lot to work out for Arianna’s future treatments and we are very lucky to have them be so understanding. We are thankful for the friends and family and members of the community that have reached out.”
Kellar-Miller’s loved ones have also proven to be a source of strength for her during this battle. She lives with her parents and her brothers, Graham Miller, 10, and Clive Miller, 8, from Miller’s previous marriage, as well as Kellar’s daughter, Alanalee Kellar, 14.
“Arianna’s brothers show her daily how to hang with the guys and are doing their part to try and help, even if it’s just making Arianna smile or laugh on a rough day,” Kellar says.
The family’s love for one another is clear, as noted when Alanalee was also featured in this publication, back in January 2016.
As reported, she was hailed as a hero by her mother, who is a lifelong asthma sufferer.
Kellar experienced a severe attack that winter, while clearing paths at her home after a heavy snowfall. She couldn’t breathe, but Alanalee, just 9 years old at the time, was quick to render aid. She retrieved and then plugged in Kellar’s nebulizer, put the medicine in and held her mother’s hand as she struggled to regain control. Alanalee continued to sit with Kellar, who had to do two treatments.
“There is no doubt in my mind, that without her that night, I would have been in the hospital,” Kellar stated after the incident. “And when I have to do that, it usually means I’m stuck there for days, sometimes weeks.” Thanks to Alanalee’s efforts, though, her mother was able to recover at home.
“I was just there for her the way she is there for me when I need her,” Alanalee shared at the time. “All that matters now is that she is OK.”
Fast forward, Kellar says that Alanalee has continued to become an amazing young lady. She is very close to her younger sister and, even with 10 years between them, they have a strong bond.
As for Kellar-Miller’s reaction to her diagnosis, her mother says that she has shown amazing courage and strength. “At her treatment last week, while waiting for the nurse to do her IV, she just looked at me and said, ‘I can be brave, right Mom?’ Of course, while trying to hold myself together, I smiled and told her, ‘Yes you can.’”
Kellar reiterated that this is all because of McKulsky and Ascension Pediatrics. “We will never be able to fully express the gratitude we have for her and the office staff there.”