Family advocates for brain health awareness following daughter’s death

Erika Manning replays the memories of her daughter Johanna in her head. 

Throughout the home, pictures of the 12-year-old aspiring designer and Sunday School scholar show her vibrant, contagious smile, hinting at a personality ready to transform the world. 

“She had a bubbly personality,” said Manning, 53, deep in thought about how Johanna was never a stranger to the people she would meet.

“She was well-rounded, had best friends at school and church, loved to do makeup and put on my wigs,” Manning said. 

The Oslo resident’s voice wavers with awe in admiration of the daughter she called ‘Mommy’s princess.’ 

“She loved life. She knew what she wanted. She loved science fairs. I wonder what she would be doing today.” 

Six years ago, the smiles stopped.

Johanna died following complications from a cerebral aneurysm. The young girl’s sudden death has since put the family on a mission of community education about brain health and overall well-being. 

Now, the family created the nonprofit organization, Johanna’s Project with Faith, Protection and Grace Inc., to host health fairs featuring doctors, nurses, physicians and more. 

“We want to educate the community where the need is great. I want everyone to be aware of the importance of taking care of your body,” said Manning, a medical assistant at Cleveland Clinic Indian River Hospital. “I want people to get out and learn something without breaking the bank. I want the (events) to be accessible to everyone.” 

Back to the basics

The family recently held its third annual Burgundy Ball, with the theme “Focusing on Brain Health and Strokes,” at the Pointe West Country Club, 7500 14th Lane in Indian River County. The June 8 event featured guest speaker Dr. Farah Fourcand, a neurology specialist at Cleveland Clinic Indian River Hospital. 

Fourcand said there are a variety of factors that could cause brain aneurysms, from genetics to high-blood pressure, smoking, heavy lifting and other risks. In some cases, aneurysms develop early on in a person’s life and grow over time.

Fourcand said maintaining a healthy brain sometimes requires getting back to the basics.

“Sleeping, drinking water, exercising regularly, eating things that you can tell what they are when you look at them – these things actually make all the difference. Live your life, be simple, try to reduce as much stress as possible,” Fourcand said. “It takes time to develop a problem. It takes time to find a solution.”

A butterfly emerging

Johanna was going into seventh grade. She baked treats for seniors, handled tasks at church and helped her grandfather change his lawnmower blades. The young choir member sang at Bethlehem Temple Incorporated Church in Oslo. Any given week she could be heard belting out gospel hymns such as “Every Praise,” “You Deserve it” and “Break Every Chain.” 

No matter where Johanna went, she left a smile on people’s faces, family members said. Manning said seniors would “light up” when they saw Johanna coming. 

“Johanna was a high energy kid. She really believed in family. A lot of people say she was ahead of her time,” Manning said. “She visited older women. She interacted through touch. They enjoyed that touch.”

Like a butterfly, Johanna would float into a room, leaving positive touches on those she came across. That special touch is the reason why the family made an image of a butterfly as the official logo for the nonprofit. 

Johanna’s creative mind led her to sketch out designs in a notepad and make dresses out of garbage bags. The SunCoast school student was a visionary, with dreams of being a designer in Milan, Italy and living with her family in Paris, family members said.

The visions never came to fruition. The morning of June 15, 2018 would change the trajectory of the promising youth.

Two phone calls and a nightmare

Johanna, described by family as a healthy pre-teen, suffered a brain aneurysm while at a family reunion in Milwaukee, Wisconsin. After three days on life support, monitors, tubes, diagnostic testing and surgery, Johanna passed away at the Milwaukee Campus – Children’s Wisconsin Hospital.   

Johanna’s death – which came without warning – was a shock to family and friends. 

Manning and her two older children, Imani Manning, 29, and Warren Williams Jr., 25, said they remember Johanna as tenacious, multi-faceted and outgoing. The family recounted the moments they remember leading up to Johanna’s passing. 

Manning said she took Johanna shopping for stylish outfits and did her hair before the big trip. 

Johanna was ecstatic as she took her first flight with her uncle on June 14, 2018 to Milwaukee for the Manning-Clerk Family Reunion. It was supposed to be a weekend of family bonding with cookouts, church service and even a planned trip to Six Flags Great America in Gurnee, Illinois. 

“She called me that Thursday night. She was so excited,” Manning said. “She was able to get there and see everybody.” 

Manning said she received two morning phone calls the next day. The first was a happy phone call, where Johanna’s grandmother asked if the girl could go to Six Flags with her aunt and cousins.    

Manning was at work when she got the second phone call. This call, however, turned into a nightmare. 

Johanna suffered from what the family initially thought was a seizure while taking a shower. The family rushed her to the hospital. Manning, her father, older daughter and son took a flight to Milwaukee.  

Manning said she walked in the hospital room and saw “what looked like a hundred machines” trying to keep Johanna alive. Then, they learned Johanna had an aneurysm coupled with a stroke.  

“It was hard. You want to be strong for your kids and parents. We prayed even harder because what we were hearing wasn’t good,” Manning said. “The doctor did surgery to try and relieve the pressure. We called pastors. I told them we needed prayer.”

The family prayed. They stayed at Johanna’s bedside from Friday morning to Monday evening.

Johanna remained unresponsive and on life support. She died that Monday, family members said.

“She didn’t complain of any headaches,” Manning said. “It was God’s will. We prayed and prayed and prayed. I feel that is where my strength came from. We are people of faith.” 

Community Involvement

Johanna’s favorite scripture was Proverbs 3:27, which reads, “Do not withhold good from

those to which it is due, when it is in your power to act.” Johanna was coming into herself and making a difference through her community work, Manning said. 

“(The work) doesn’t have to stop since she’s not here,” Manning said.

Through the nonprofit organization, Manning and the family continue to lead efforts to educate the community on brain health not only in September – National Brain Aneurysm Awareness Month – but throughout the year. The family will host the annual virtual aneurysm 5K walk at 8 a.m. on Sept. 7. The event will start from Bethlehem Temple Incorporated Church and end at South County Park.  

The project – which the family created in 2019 – also provides services such as counseling, education, tutoring, food, clothing and beautification projects. Family members say the organization in Johanna’s namesake continues her legacy by giving selfless service to those in need, particularly seniors and disadvantaged youth. 

The nonprofit aims to secure a building in south county where the family can regularly host events.

Brain Health

The goal remains to raise awareness about brain health and paying attention to the body’s sometimes quiet signals. 

The June 8 ball touched on the importance of how the brain works and the possible causes of brain aneurysms. Fourcand said aneurysms in the brain are small outpouchings from blood vessels.

A ruptured aneurysm can cause a person to have a severe headache, loss of consciousness, seizure, nausea, a stiff neck and blurred vision, according to the Mayo Foundation for Medical Education and Research. Medical experts say an aneurysm often looks like a berry hanging on a stem in X-ray images. 

Globally, there are nearly 500,000 deaths each year caused by brain aneurysms, said researchers with the Brain Aneurysm Foundation.

African-Americans and Hispanics are twice as likely to have brain aneurysm ruptures compared to whites, according to researchers. Women are more likely than men to have brain aneurysms, medical experts said.  

Some people inherit the predisposition for an aneurysm, Fourcand said. Other individuals who have high blood pressure can develop aneurysms, along with smokers.

“Smoking is not just dangerous for the lungs. It’s dangerous because it toxins throughout the body. Just like it weakens the skin, it also weakens the blood vessels,” Fourcand said. “The blood vessels can thin out and make it more likely for them to be stretchy and cause aneurysms to form.”

Fourcand said those who do heavy lifting – such as bodybuilders, employees who carry heavy boxes or equipment for work or anyone doing activities requiring intense pushing – are also at risk of developing brain aneurysms. 

When an aneurysm does form, there is a time not to worry, and a time to worry, Fourcand said. The neurology specialist said not all aneurysms that form in the head are brain aneurysms. 

“Oftentimes there are aneurysms that are outside of the brain, but in the head. Those are much less dangerous,” Fourcand said. “When an aneurysm is in the brain, then that’s more dangerous and increases the risk of it rupturing.”

Having the proper neurosurgeon for treatment is crucial, according to Fourcand.  

“I wish this (treatment) was much more accessible to everyone,” Fourcand said. 

Following Johanna’s lead

More memories of Johanna turn up in Manning’s mind.  

Johanna’s last birthday dinner was just two months before her untimely death. The family gathered at Red Lobster, where Johanna enjoyed her birthday ice-cream.

“We sang happy birthday to her,” Manning said. “She was a foodie. She loved Conchy Joe’s Seafood, Olive Garden and Red Lobster.” 

The family continues to keep Johanna’s memory alive by practicing the three pillars embedded in the framework of the nonprofit – faith, protection and grace. Each pillar represents the meaning behind the names of Manning’s children. 

Imani means “faith,” Warren means “to protect” and Johanna means “God is gracious.” Imani Manning is a second grade teacher in the Orange County School District in Orlando, while Warren Williams is a percussion director at Treasure Coast High School in Port St. Lucie.   

The family will continue to follow Johanna’s lead, lending helping hands wherever they may roam.

“Johanna was strong willed. She didn’t like stuff being out of order. She liked things to be done correctly,” Manning said. “She was serious about quality time with family. She knew what she wanted and had big plans for life.”

Photos of Johanna provided by Manning family