Although Alicia Hill is a perky 9-year-old who loves dancing and making her own penguin puppets, her smile masks years of pain which have become normal to her.
“She has this war going on inside of her body that nobody understands. Her body knows nothing other than pain,” her mom Ronni Hill said.
Alicia and her parents, Justin and Ronni, have been struggling with something most people never heard of, Hypermobility Ehlers-Danlos Syndrome Type III. Although Alicia bears the brunt of the connective tissue disorder wreaking havoc on her gastrointestinal tract, her parents walk a lonely and confusing journey. As they try to tackle the ever evolving symptoms of the rare disorder, the nearest support group they can find is in Pennsylvania.
Meanwhile, their medical bills continue to climb as they try different combinations of medication in an effort to keep Alicia safe and comfortable.
Alicia is the great granddaughter of Jack and Marylou Callahan of Beloit, granddaughter of John and Rhonda Callahan of Beloit and Peggy and Brian Hill of Milton.
Although Alicia takes 16 pills a day and has endured 13 hospitalizations, she was the picture of health until she was four years old, when she appeared to be bloated. Her doctor thought it was constipation or lactose intolerance. However, she started intermittently getting 105 degree temperatures which the family thought were due to kidney infections.
Over the next few years, Alicia would be on and off various medications and diets with no improvement. She underwent endless CT scans and X-rays as doctors tried to pinpoint the root of her symptoms.
“Years went by and we had no answers what was going on with Alicia. She kept getting sick, and her stomach kept getting bigger and bigger,” her mom Ronni explained.
She later underwent a surgery to remove a mass in her intestine. Later an X-Ray showed she had a bowel obstruction.
Early September of 2015 was the first time a doctor mentioned the possibility of Ehlers-Danlos Syndrome. Later that September Alicia had a Magnetic Resonance Enterography (MRE) scan which showed she had gastroparesis or “stomach paralysis.” In March of 2016 Alicia underwent genetic testing and it was confirmed she had Hypermobility Ehlers-Danlos Syndrome Type III.
Ehlers-Danlos Syndrome, an inherited genetic disorder, is a group of connective tissue disorders caused by various defects in the synthesis of collagen. There are six different types of the disorder, but all share joint laxity, soft skin, easy bruising and some systemic manifestations, according to the Ehlers Danlos Society
Because the condition is genetic, there is no cure. The best doctors and her family can do is to try to treat the myriad symptoms which are centered around her gastrointestinal tract for now.
Her gastroparesis, or a paralysis of the stomach, results in Alicia having a hard time processing food, causing nausea/vomiting, weight loss, pain, reflux and stomach distention. She also has an obstruction of the intestines caused by the nerves and muscles not working.
Her colon is two times the size it’s supposed to be and has twisted, which could result in future surgery.
While Alicia might feel OK for a short while, her stomach can quickly become distended and she will writhe in pain due to stomach contractions. Alicia’s temperature and pulse can also fluctuate quickly, so the family keeps a bag for hospital trips packed at all times.
“We never know what her day is going to be like,” her mother said.
The family has gone down to one income as Ronni had to quit her job to care for Alicia. Although Justin is a truck driver and the family has medical insurance, they must continually struggle over which medications and treatments are approved for reimbursement. They often pay out of pocket, leaving them with a growing medical debt.
“She came home with a feeding tube in April because she couldn’t eat. We got denied coverage because the feeding tube and supplies weren’t considered medically necessary,” Ronni said.
Despite it all, her mother keeps fighting for Alicia’s care and to keep her spirits up. Although Alicia is in a homebound school program, she’s in a dance class and rides bikes with her mom when she can.
Because her condition could worsen in her teen years, Ronni’s trying to keep her as active and healthy as possible in hopes of a better future outcome.
Because only 4 percent of the population has Alicia’s condition, it can be hard to find support or anyone with knowledge of how the disease progresses or ideas for treating it. Very few children are diagnosed with the condition. Many of the adults with the condition, Ronni said, have been misdiagnosed for years. Ronni became so desperate at times to try to find triggers for her daughter’s severe reactions she filled up notebooks of copious observations. However, neither Ronni nor her doctors could find any clear answers.
Those with the condition need to find the right medication and surgical procedures. As some medications may begin to fail, others must be found.
“It’s ever changing and a constant battle,” Ronni said. “No two people have the same treatment.”
Although Ronni credits her daughter Alicia for singing, dancing and smiling despite her pain, Ronni seems to be a role model and cheerleader for positivity as well. She’s had to devote all her time to being a caregiver, but said she makes the most of each day.
Alicia and her mom can finish each other’s sentences as they’ve spent so much time together and there’s an easy laughter between them. Their most recent adventure was making a “movie theater” with the couches in the living room and playing some of Alicia’s many made-up board games.
“She also likes to do science. We made a tiny little volcano,” Ronni said.