Angel Merritt, far right, stands with her family, including her daughter Hope, third from the left. Angel and Hope both underwent brain surgery for a rare condition called chiari malformation and are trying to raise awareness.

Angel Merritt, far right, stands with her family, including her daughter Hope, third from the left. Angel and Hope both underwent brain surgery for a rare condition called chiari malformation and are trying to raise awareness.

Photo provided by Angel Merritt


West Bloomfield woman raises awareness for rare brain condition

By: Andy Kozlowski | West Bloomfield Beacon | Published October 14, 2019

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WEST BLOOMFIELD — A mother and daughter from West Bloomfield are trying to get the word out about a rare medical condition they both have, in hopes that greater awareness will lead to a cure — and that those with the condition can identify it early.

Angel Merritt has four daughters: twins Hope and Faith, age 12; Gabrielle, 8; and Paige, 3. Angel and Hope were both diagnosed with an extremely rare brain disease called chiari malformation.

“In simple terms, the way that the doctor explained it to me when I was first diagnosed was my brain was literally falling out of my head,” Angel said. “My brain was falling into my spinal cord.”

She said chiari malformations are structural defects at the base of the skull and cerebellum, the part of the brain that controls balance. The cerebellum and parts of the brain stem normally sit above an opening in the skull where the spinal cord passes through, but a chiari malformation occurs when part of the cerebellum extends below this into the upper spinal canal.

There is currently no known cause, although some studies have deduced a possible link because many people born with the condition had parents in the Vietnam War when Agent Orange was used. Angel’s father served in Vietnam, and her mother is Vietnamese.

It’s a medical condition that isn’t well-known in society, although that may be starting to change. Chiari malformations received a visibility boost recently when Minnesota Vikings linebacker Kentrell Brothers started an awareness campaign after his mother was diagnosed with the condition.

Both Angel and Hope underwent brain surgery in 2017. Hope, a student at Orchard Lake Middle School, also had spinal fusion surgery last August. The majority of people with chiari malformation also have scoliosis, and in Hope’s case, it was at risk of crushing her heart and lungs. At press time, Angel was starting her own spinal fusion surgery.

For Angel, her condition announced itself in dramatic fashion when she lost control of half of her body while teaching a dance class at a studio she owned. In the subsequent brain surgery, part of her brain was removed, the part that controls motor skills. Even so, she can still dance today.

The symptoms had actually been present much longer — she just hadn’t realized it. Angel had suffered excessive headaches ever since she was a young girl. She was born with limited reflexes, exhibiting no reaction when doctors tapped her knee. She has an unusually high tolerance for pain, and as an adult, one of her eyes started to droop. Each is a potential indicator of chiari malformation, yet each was dismissed by doctors as something benign.

The migraines became more severe than ever about two months before the incident at the dance studio. She had just begun a new job managing a bank while still running her dance school, and at the time, she thought the headaches were due to stress and not getting enough rest. After the dance studio incident, the headaches continued to intensify. Finally, the pain reached a point where she went to urgent care, which in turn sent her to an ER. After a CT scan, the doctor told her she has chiari malformation and that there is no cure for it.

“He said he could give me something to keep me comfortable, but I needed to find a doctor who could help me,” Angel said. “This was when everything changed.”

Hope had also experienced headaches, since she was about 3. When she was in kindergarten, she would sometimes just lie in the middle of the floor in pain.

“Luckily, we caught Hope’s (chiari malformation) so early that she did not experience some of the permanent damage that I have,” Angel said. “She doesn’t suffer from headaches as often as I do, and she was able to get the spinal fusion surgery to correct her spine. Hope is a fighter — if you asked her what changed in her life, she would say really nothing. She has some setbacks … but she said she feels like any other kid. All she is looking forward to doing is riding her bike and her horse.”

As for Angel, she feels blessed that she pinpointed the source of the symptoms.

“When I was first diagnosed, the surgeon told me if we didn’t catch it when we did, I would have been brain dead within six months,” Angel said. “The surgery is not a cure, but it slows down the progression. And each person is different: Some people have no pain or issues after the brain decompression surgery, and some people are worse. I was doing well the first year after surgery. Now I am having severe headaches again.”

Maintaining the right mindset has been key.

“I believe that we don’t get to choose what we go through, but we can control how we go through,” Angel said. “When I was diagnosed, I was preparing for my dance school’s big recital. Thinking about all the little kids who were working so hard for the big show kept me going. I was determined to be at the recital. From my hospital bed, I was still ordering costumes, programs, signs. My surgery was May 22, and the recital was the second week of June. I was there, front and center, and passed out the trophies.

“At the time, my daughter was not diagnosed yet, but once she was is when I realized she was watching my every move,” Angel said. “The doctor said they never had a kid so calm and collected before surgery. Hope said, ‘Mommy, I saw how strong you were, and you came out OK, so I know I’ll be OK.’ I teach her that she is not her disease, and she can still do whatever she wants to do. We are warriors — and we have the war scars to prove it.”

Antonio Sims, Angel’s stepbrother, said his sister has always been strong and determined.

“It wasn’t until finding out about the disease that I realized just how strong she really is, because of the amount of pain she never told us about over the years,” Sims said. “Many are suffering silently, as Angel did, but maybe if people who have similar symptoms are made aware of the disease, they will be able to inquire about it and begin gathering information.

“I know my sister,” he added. “She’s not going to go through all this and not do all she can to help others benefit from her experience.”

Those who want to learn more about chiari malformations and support research for a cure can visit conquerchiari.org/donate.html.

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