Springville community rallies around teen with rare disorder
Mihkenna Merrill, left, smiles with her mother, Dara Merrill. Mihkenna recently had surgery for median arcuate ligament syndrome, or MALS; and superior mesenteric artery syndrome, or SMAS.
Mihkenna Merrill readies for surgery Dec. 13, 2017. Mihkenna recently had surgery for median arcuate ligament syndrome, or MALS; and superior mesenteric artery syndrome, or SMAS.
Mihkenna Merrill recovers from recent surgery. Mihkenna recently had surgery for median arcuate ligament syndrome, or MALS; and superior mesenteric artery syndrome, or SMAS.
Mihkenna Merrill recovers from recent surgery. Mihkenna recently had surgery for median arcuate ligament syndrome, or MALS; and superior mesenteric artery syndrome, or SMAS.
Mihkenna Merrill smiles at home in Springville after returning from surgery in California. Mihkenna recently had surgery for median arcuate ligament syndrome, or MALS; and superior mesenteric artery syndrome, or SMAS.
Mihkenna Merrill smiles during a hike with a friend in 2016, before she endured more than a year of being very sick. Mihkenna recently had surgery for median arcuate ligament syndrome, or MALS; and superior mesenteric artery syndrome, or SMAS.
It’s a lonely path when you physically don’t feel well, and no one can tell you why.
Mihkenna Merrill, 16, and her mother walked this solitary path for more than a year now, until one doctor lit the way.
“I want to tell people who are not happy with their diagnosis, or not getting better, to keep fighting, keep going until you find the right doctor. The right doctor makes all the difference,” said Dara Merrill, Mihkenna’s mother.
It took more than a year, six doctors and specialists, multiple hospital stays and too many hours in pain and anguish before Mihkenna found the answers to her health struggles.
In August 2016, she started having abdominal pain, extreme fatigue and lightheadedness. But the end of that year, she was suffering through episodes of nausea and vomiting. Doctors ran tests that all came back fine. So they told Mihkenna and her mother that it was just stress or something emotional.
“But my daughter is the least stressy girl out there. I mean, she should have been born in Hawaii, where you just kind of do your own thing,” Merrill said.
She wound up hospitalized this April with severe dehydration and a potassium deficiency, because she literally could not keep any food down. Merrill said doctors ran tests again, but nothing was conclusive. Doctors thought Mihkenna had an eating disorder, but Mihkenna and her mother adamantly denied that. At one point a doctor said Mihkenna’s ailments were psychosomatic, and told Mihkenna she could get better whenever she decided.
“I can’t tell you how heartbreaking it is to sit there and hear a doctor tell your daughter to her face that’s it’s all in her head,” Merrill said. “I don’t know how many times I felt we were turned away without the doctors even trying.”
Mihkenna’s condition only worsened, resulting in a feeding tube — that didn’t work — and finally a peripherally inserted central catheter, or PICC line. Though the PICC line supplied her with much-needed nutrition, Mihkenna continued to suffer fatigue, dizziness, nausea, vomiting, bloating and constant abdominal pain.
For most of 2017, Mihkenna nibbled at food, and could not attend school due to her condition. Through it all, she knew she had to eat — even just a few bites a day — though it pained her stomach and it most likely would come right back up. So, for much of the time, she chose things based on how they tasted, or how little they hurt, coming back up. The past year, she explained, was “H-E-double hockey sticks.”
“A lot of times I didn’t know if I was going to live or die, and I was tired of being called crazy and told you have something else when you know you don’t,” she said. “I’m so glad my mom believed in me and fought for me.”
Finally in November, they saw a new doctor, who diagnosed Mihkenna with two rare conditions: median arcuate ligament syndrome, or MALS, where the celiac artery is compressed, causing severe abdominal pain; and superior mesenteric artery syndrome, or SMAS, which created an obstruction in her small intestine. With this diagnosis, Mihkenna and her mother finally found hope.
“No one knows what causes MALS and SMAS, in what I’ve researched. But it seems to happen to boys and girls during puberty, while they are growing,” Merrill said.
Merrill said she wants to make more people aware of these conditions, so others don’t have to suffer without answers like her daughter.
Mihkenna and her mother traveled to California for a unique surgery Dec. 13 to fix both conditions. To combat the MALS, surgeons removed a nerve bundle in her stomach that was causing the pain. To rectify the SMAS, surgeons performed a bowel resection, disconnecting the section of her intestines that was not working, and reconnecting two sections of working bowel.
Mihkenna’s surgery was a success, and if things progress as doctors foresee, this is the only surgery she needs. Resting and recovering at home in Springville on Friday, Mihkenna said by phone that she already can tell a difference. She’s excited to finally eat vegetables and fruits again.
“Pasta was sooo good,” she said of one of her first meals after the operation. “And Naked fruit juice — that was the bomb. Everything is delicious, and I’m so happy I can eat everything again. It’s only a little over a week post-op and I never thought I could be eating pot stickers and salad again. It’s wonderful.”
She also felt like she’d been given the best Christmas gift — to feel healthy again.
Mihkenna Merrill’s surgery was not covered by the Merrill’s insurance, and cost almost $40,000, which her mother had to secure a loan to pay for up front. Dara Merrill is also still paying for a year’s worth of doctor visits and hospital stays for her daughter while they searched for answers. The Merrill’s neighbors, friends and others in the Springville community have rallied behind them, contributing to a GoFundMe account, www.gofundme.com/medical-fund-for-mihkenna, set up for Mihkenna’s medical expenses.
Jim and Ruth Morrison, owners of Funfinity in Springville also helped, despite not personally knowing Mihkenna. All proceeds from their Dec. 23 Christmas sales were applied toward Mihkenna’s medical expenses.
“When we heard the story about Mihkenna and her health issues, we wanted to help her and her family,” Ruth Morrison said. “The last day Funfinity is open before Christmas is always a big day for us. Our family decided that donating the profits from Saturday would be a great way to share the Christmas spirit of giving.”
According to Jim Morrison, they earned $1,600 Saturday, and an additional $2300 in community donations came in as well. Other members of the community also sold homemade Christmas decorations and auctioned off items provided by Grimm Lock Wands, Warrior’s Way, Avia Salon, K2 Creations, and various local businesses Saturday outside Funfinity to raise money for Mihkenna.
One family donated all the money in their change jar from home, adding some $50 bills to it. The Morrisons also received donations from business partners this week, adding $500 more. They will give the money to the Merrills next week.
“It really helped us have a wonderful Christmas spirit this year,” Jim Morrison said of helping the Merrill family.
To date, community efforts have raised $15,000 on GoFundMe for Mihkenna’s medical fund. Those wishing to add to this amount can make an online donation at Mihkenna’s GoFundMe.
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