Buzzzzzzz. 

The sound of the trimmer was deafening as it slid back and forth across Nevaeh’s head. Tears rolled down her face as she watched the strands fall. She could barely bring herself to look in the mirror – she didn’t want to see the scar snaking around the side of her head.

“Losing her hair was the hardest part of this journey,” said her mom, Mariah. “When they first told her she needed brain surgery, and that she’d lose most if not all of her hair, Nevaeh shut down.”

So, in that moment, watching intently as her daughter had the remaining patches of hair shaved from her tiny head, there wasn’t an ounce of hesitation for Mariah to sit down right after her.

“If she will look different, then we will both look different,” she said. “I told her, ‘I want you to shave my head so that we match.’”

Nevaeh picked up the trimmer and took it to her mom’s head – taking just a little bit of power back. It was a pivotal moment in her medical journey, one the entire family has fought alongside her since she was diagnosed with epilepsy years prior.

It was an Easter morning, three years ago, when she had her first seizure.

“We were having a conversation and all of a sudden she looked up into the sky and started seizing,” said Mariah. “I had never seen anything like it. It terrified me.”

They were on their way to the emergency room when she suffered another episode.

For years, Nevaeh suffered through frequent seizures, struggling through as many as 13 a day. The impact of each seizure ranged from turning purple and losing control of her body to not breathing at all. Medication calmed the illness, but did not eliminate the worry.

“She wore a helmet and an aide followed her around at school, which really singled her out. It was absolutely horrible and heartbreaking,” exclaimed Mariah.

Hope came for Nevaeh when a doctor discovered the cluster of cells in her brain that was causing her epilepsy. She underwent brain surgery at Golisano Children’s Hospital to repair the cluster, and since then has been remarkably healthy, with no seizure activity.

While Nevaeh was thrilled with the prospect of being seizure-free, the emotional struggle of dealing with a critical illness has been daunting. She says that having compassionate support from heroes, like her mom, has been necessary for her to heal and make it through.

“Just the other day we were talking about our hair growing back in, and I reminded her, ‘we are in this together,’” said Mariah. “She told me how much us going bald together meant to her.”

Nevaeh has blossomed knowing how many people from the community are supporting her as well, including those at Make-A-Wish who have been there to offer powerful encouragement and continued hope.

“Having a wish lit her fire and she was beside herself with joy and excitement,” Mariah said. “It was something she could turn to and think about when she was feeling so unhappy.”

Nevaeh’s wish for a French Bulldog puppy arrived at a time when she truly needed a spirit lift.

“We named him T’Challa for Black Panther, and he’s restored the bright spirit she always had, but that her condition had dampened,” Mariah said. “To be able to have this new friend that she can hold, love on, and rest with, it’s such an outlet of comfort and healing. It’s truly helping her each and every day.”