It started with a high schooler caring for a child impacted by a disease. The high schooler, now a Ball State graduate, will be traveling abroad to help with research into the same disease.
Hannah Fluhler, a Ball State nursing graduate, was awarded a Fulbright scholarship to work for 10 months at a medical research institute in Melbourne, Australia.
Fluhler, will be working in the Genome Stability Unit at St. Vincent’s Institute for Medical Research with a 12-member team under Andrew Deans, the head of the unit. She will be working on Fanconi Anemia (FA) research.
According to the National Institute of Health, FA is a condition that affects many parts of the body. People with this condition may have bone marrow failure, physical abnormalities, organ defects, and an increased risk of certain cancers.
FA is a rare disease that causes eventual bone marrow failure and cancer, a disease which impacted Aria Gatzlaff, a child who Fluhler provided respite care for, when she worked in child watch at the YMCA in Yorktown, Indiana, as a high schooler.
“I met [Aria] and instantly fell in love with her,” Fluhler said.
Aria, born Jan. 12, 2011, was blind, deaf, was missing both her thumbs and had other physical anomalies, or as her father, Kevin Gatzlaff, associate professor of insurance, puts it, “all the textbook Fanconi Anemia symptoms.”
Gatzlaff said Immediately upon Aria’s birth she was admitted in the newborn intensive care unit for over a month. While he and his wife knew before her birth that Aria was going to have medical problems, she was almost two years old when she was diagnosed with FA.
According to the National Institute of Health, more than half of people with Fanconi anemia have physical abnormalities.
“We were on the far end of that spectrum, where pretty much everything that could go wrong does go wrong,” Gatzlaff said.
He said there were constant and long hospital visits, where the same pattern would keep happening — they’d bring her in, nobody would know what to do, eventually she would get better and they would send her back home.
“We just got used to that and that was our life,” Gatzlaff said. “It was a milestone when we were able to stay three months out [of the hospital]. That was a big deal.”
Toward the end of Aria’s life, he said a lot of blood transfusions had to be done due to the disease and when it even that wasn’t going to help, he and his wife decided to take her to hospice care in 2015.
“It’s hard to find a babysitter that you trust and it’s more than a babysitter. You’ve got to have somebody who’s going to be able to deal with some of the things,” Gatzalff said.
Things like a G-tube or a gastronomy tube, which Aria had in her stomach through which she had to be fed all her medicines, he said.
“It’s not difficult, but that’s just not something that the average person can just walk in and do,” he said. “You have to be willing to pay attention and there’s definitely a little bit of skill that goes on to it.”
It was a lot to expect from somebody who was going to watch their kids for a short period of time,” he said.
When Hannah met Aria:
Aria’s mom Rachel Alaniz used to occasionally drop her off at child watch at the Yorktown YMCA.
“What she found was when she dropped off the kids, because Aria was so different, people were afraid,” Gatzlaff said. “A lot of times when you dropped off the kids in childcare, [Aria] would be in the exact same spot that she left her in.”
It was there Alaniz noticed how Fluhler interacted with and looked after Aria. Fluhler would take the time to learn how to put Aria’s hearing aid on and how to teach Aria object cues that were used to communicate with her.
“Hannah was doing all these kinds of things where most of the childcare workers were maybe a little intimidated and weren’t really doing it then,” Gatzlaff said. “Noticing that made her say that this was somebody who could probably ask to watch her on a more regular basis.”
Alaniz said Fluhler, as a teenager, would ask them to show her how to use things like the G-tube that was connected to Aria’s body and learn how to do it herself.
“Hannah really made a choice to connect with her and she made a choice to love her, and that was such a cool thing to see from a young person,” Alaniz said. ”She’s just like a compassionate soul.”
Memories of Aria:
Eventually, Aria died Sept. 20, 2015.
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“Aria was such a cool, such a unique kid,” Alaniz said. ”When she died that was so hard because for five years I didn’t realize that my whole identity was being Aria’s mom. I was her eyes, I was her ears, I was her voice and I was her biggest advocate.”
Alaniz said she went all over the country to get the medical care necessary for Aria.
“It was also the worst possible thing for me to leave her and for our family because she was amazing,” she said. “She had a really tough life. I’m thankful that she is free from all that she had going on.”
Gatzlaff said one of his most fond memories of Aria was being able to play loud music on his guitar because she couldn't hear very well.
”In the basement I’d be able to turn the amps up the way I like to play and just really have a good time down there, and she’d be bouncing around and she could feel it and she could hear it. That was really cool,” he said.
“We had a day where we let people come and say goodbye to Aria. I remember standing in my garage and Hannah saying, ‘I’m going to do something about this.’ She wasn’t even in college yet,” Alaniz said.
Fluhler too said the reason she was interested in Fanconi Anemia research was because of Aria.
Fluhler will be working in Melbourne from September through June. There she will also help with planning the Fanconi Anemia family day for Australia and New Zealand.
When she returns, she hopes to work as a nurse in the natal intensive care unit to gain experience with newborn children and then reapply to medical school for either an MD. PhD or a Doctor of Nursing Practice PhD.
Her goal is to help give diagnosis treatment methods as a future healthcare provider especially in the newborn population.
“One thing we always said was Aria was good in bringing out the best in people that we knew,” Gatzlaff said. “That was really good to see.”
People with disabilities:
Alaniz said she worked for a state disability advocacy organization, worked on state legislation with the National Organization for Rare Disorder’s state liaison and has also built a connection with Be The Match organization.
She said she has helped guide families through things like advocating for their kids and helping them with healthcare financing
Alaniz said she always tells people to not shy away from people with disabilities and be open to asking them questions if they have any.
“I’ve never been annoyed when somebody asks a question. I’ve never been annoyed when a kid made a comment about my kid or asked a question about my kid,” Alaniz said. “I have been annoyed when their moms told them to hush and not do that, or say that, and don’t look at that person because we all look at people. We shouldn’t not look at people with disabilities.”
She said the more society helps make buildings, activities, schooling and other regular places and tasks more accessible for people with disabilities, “the more we can learn from them.”
“People with disabilities are just people and I think when you define a person by their disability, you’re doing yourself and them a real disservice,” Alaniz said ”I think the more that we can make buildings more accessible, activities more accessible, schooling more accessible, the more we can all learn from each other.”
She said she always tells people to not shy away from people with disabilities and be open to asking them questions if they have any.
“I’ve never been annoyed when somebody asks a question. I’ve never been annoyed when a kid made a comment about my kid or asked a question about my kid. I have been annoyed when their moms told them to hush and not do that, or say that, and don’t look at that person because we all look at people. We shouldn’t not look at people with disabilities.”
Contact Rohith Rao with comments at firstname.lastname@example.org or on Twitter @RaoReports.