It’s been almost a year and a half since Anna May, a 2014 Shelton High School graduate, was diagnosed with moyamoya. The rare, life-threatening disease is caused by narrowing and blocked arteries at the base of the brain.
Since the diagnosis and two brain surgeries in February 2014, the 19-year-old’s health issues have continued, and new ones have emerged.
“Moyamoya doesn’t go away,” said Anna’s mother, Julia May. “She’s going to have to deal with this. We’re going to be living with this for a long time.”
The disease is characterized by a “ball” of tiny vessels that forms in the brain to compensate for the arterial blockage. In contrast to Anna’s neural network, a normal brain has several large arteries that carry blood to all areas.
The brain surgeries performed in California involved revascularization of Anna’s brain, using vessels from the back of her head, aiming to create blood flow that had been lost.
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“Once a month I ask my mother if I need another surgery.”
— Anna May
The surgeries “reduced the chances of a catastrophic stroke significantly,” Julia May said, but this past October, Anna suffered a “violent” grand mal-seizure.
“It was terrifying. She was seizing for 25 minutes,” her mother said, and the 45-minute wait for an ambulance seemed like an eternity.
Once at Yale-New Haven Hospital, the Mays had to wait for special permission to have Anna admitted through the emergency room, due to the Ebola scare.
Seizures and mini-strokes
She spent a week at Yale-New Haven Hospital undergoing tests. “I was diagnosed with epilepsy,” Anna said, and she’s had seizures and transient ischemic attacks — or mini-strokes — in the months since.
“There’s a misfiring in the brain,” she said, but the family can’t get corroboration that the seizures are a result of the brain surgery.
After suffering “awful” side effects from one drug, she’s now on another, and the dosage increases each time she has a seizure.
Her sleep has also been affected. She has trouble falling asleep and wakes up often during the night. “It’s a huge problem,” Julia May said.
Doctors are reluctant to relate the sleep disorders to moyamoya and have given her explanations ranging from an iron deficiency and nerve pain to excessively late bed times.
Anna said she’s experiencing the muscle “twitching” and migraines that she experienced before the brain surgery.
“Once a month I ask my mother if I need another surgery,” she said. “It’s concerning that I still have the symptoms.”
In some cases, the brain surgery, often considered risky, is repeated in five years.
‘I can’t just pause life’
Moyamoya has “put things on hold,” Anna said, and she’s postponed plans to attend the University of New Hampshire. “I get discouraged,” she said.
She enjoys seeing her friends who are home from college for the summer, but she knows that she’s missing the life they’re leading.
She works part time at a movie theater in Trumbull, has worked over the past year at T.J.Maxx and Jones Family Farms, and takes English and math classes at Housatonic Community College.
“I can’t just pause life,” she said. “I have to push forward. I was brought down a different path because of this. It’s the dirt path, not the paved road.”
“It’s important for her to give back,” her mother said, and Anna volunteers each week at the Ronald McDonald House in New Haven and has set up Anna’s A-Team for those who wish to make blankets for hospitalized children.
“This is a great way for kids to comfort kids,” Anna said, and those who wish to make blankets or donate supplies may visit the A-Team on Facebook.
“Anna is very determined,” her mother said. “If every kid had a trace of that, they’d be successful. She’s always reaching out. She looks outward rather than inward and forward rather backward.”
Fund-raiser being planned
During Anna’s health journey, the family’s medical bills have been piling up, and medical insurance covers only a portion of costs incurred.
Her annual angiograms cost $40,000 each, and there’s still “a good chunk” of the $1-million brain surgery costs to pay, Julia May said.
Recently, the insurance company rejected a $300,000 bill, and medical costs will be ongoing. “She’ll always need insurance,” May said. “We’ll keep her on ours for as long as possible.”
To help offset the costs, friends are organizing a June 25 fund-raiser spearheaded by Candace Linnen that’s planned as an “information night” about moyamoya disease.
May said she was reluctant to ask for help through fund raising. “Julia, it’s not for you,” a friend told her. “It’s for Anna.”
The fund-raiser “is a lovely way to show support for the daughter who never asks for anything,” May said. “We feel grateful.”
How to purchase tickets
Those who buy tickets for the event, which will take place Thursday, June 25, from 6 to 10 p.m. at Vazzano’s Four Seasons in Stratford, will support not only the May family, but also the Moyamoya Foundation and the Katelyn Foundation Inc., set up to promote childhood safety.
The cost of tickets is tax-deductible. Tickets are $40 and include dinner and a cash bar.
Raffle tickets may be purchased at the event, and prizes donated by local businesses include weekend trips, gift baskets and a television set.
May praises the generosity of the more than 50 businesses that contributed.
“Not one said ‘no’ when approached,” she said. “It shows what a supportive community Shelton is.”
A local neurologist will discuss moyamoya disease, and the event aims to make people aware of symptoms that could include migraines, hand cramps, slurred speech, strokes, memory loss and learning disabilities.
Can be misdiagnosed
The disease could be misdiagnosed, May said, and she urges those with symptoms to undergo an MRI (magnetic resonance imaging scan) with contrast.
“There are so few people who have [the disease]. The awareness is minimal. There’s no support group for moyamoya,” May said, and no drugs that target the disease.
The only option for treatment is brain surgery.
Anna said she’s found comfort by reading Tuesdays with Morrie by Mitch Albom. The book tells the story of a man afflicted with ALS (amyotrophic lateral sclerosis) who approached life with courage and humor.
‘I get on with my day’
“It seems like a waste of time to feel sorry for myself,” Anna said. “I try to focus on what I can control. In the morning, I pity myself for five minutes and then I get on with my day.”
To buy tickets for the fund-raiser, call Robert Testo III at 203-876-0318. Those who can’t attend the event may send donations to Candace Linnen, 24 Woodlawn Terrace, Shelton, CT 06484.