LUDINGTON, Mich. — Last year, Autumn Jolly woke up each morning looking forward to playing with her six daughters, cooking and eating meals as a family. A year later, she's praying every night that she simply wakes up to see another day with her girls.
In February, she began feeling a pain in her chest. She described it as feeling like someone was trying to crush her. In response, she quit smoking, hoping it would solve the issue, but giving up cigarettes wouldn't be enough. She began to lose weight rapidly, at one point dropping 15 pounds in a two-week span, even though she was already light.
It wasn't until she took one of her daughters to the doctor that she finally got checked herself. Her first EKG returned abnormalities, but doctors couldn't figure out the cause, nor a solution.
"I feel like I'm dying every single day," she said. Her symptoms got worse, she continued to shed pounds, and food got harder and harder to keep down. Eating became painful, she would experience bouts of lightheadedness, even momentarily blacking out.
A number of answers came from her family physician calling for more tests and visits to specialists. Jolly was diagnosed with four rare diseases, each responsible for part of her symptoms.
- Gastroparesis has caused paralysis in part of her stomach, making it difficult and painful to digest food, leading to dehydration and malnutrition.
- Postural Orthostatic Tachycardia Syndrome (POTS) has impacted her blood flow, causing the blackout spells and lightheadedness.
- Renal Nutcracker syndrome (NCS) has caused kidney and abdominal pain.
- Superior mesenteric artery syndrome (SMAS) means that part of her small intestine is compressed between arteries, also contributing to weight loss and nausea.
All of these diseases are treatable, but the combination facing Jolly could prove fatal, especially given the difficulty she faces when trying to eat. She worries she'll need a feeding tube, or worse.
"Sometimes I cry myself to sleep," she said. "Sometimes I beg whoever is listening to make sure that I wake up the next morning because I’m not ready to leave my girls yet."
Jolly was told doctors in Michigan couldn't treat her conditions, and she would need to travel to find a qualified specialist. After searching for months, she has an appointment at the beginning of July with a doctor specializing in gastroparesis at the Cleveland Clinic, but that appointment is just the start of a long journey ahead.
"I had to quit my job, my husband has had to miss a lot of work," she said. "This is my verge of life and death."
Her insurance has helped to set up the appointments, but many of the treatments she's likely to need are expensive, potentially unfeasible for the mother of six. She has been told an intestinal transplant could cost upwards of a million dollars.
"I know that some people don’t make it because or money and how much it costs," Jolly said.
More than anything, she's concerned for her daughters. All six of them are between five and ten years old, and more than her own health, she doesn't want them to grow up without a mother.
"One of them came up to me the other day," Jolly said. "She cuddled me on the couch and said ‘Mommy, I really miss when you used to be able to run around and play with us.'"
Autumn and her family have set up a Go Fund Me to help cover the costs of treatment. If you'd like to donate, follow this link.
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