The Magic of Faith

Remembering Faith Johnson

Faith Marie Johnson was born on August 1, 2020 in Winchester, Virginia, and passed away on February 22, 2025 in Charlottesville, Virginia.

On February 28, 2025, as the world recognizes Rare Disease Day and the challenges faced by children with rare diseases, I had the privilege of interviewing Faith’s mother, Danielle Johnson, and her sister, Makayla Johnson, over Zoom.

This is their story.

by Jo Kaur, Founder of Riaan Research Initiative

Faith, with her mom, Danielle Johnson

"Faith lit up the room. Her smile, her presence. If anything bad was going on, Faith’s laugh would take all of that away. We don't even know the word for that...it's indescribable. Her laugh could take away a whole bad mood. It outweighed everything in that moment."

- Danielle & Makayla Johnson, Faith’s Mom & Sister

(February 28, 2025) - Faith Johnson weighed the most she’s ever had the week before she passed away: 25 lbs.

“She was stable, she was doing well,” said Danielle Johnson about her daughter Faith before the incident at school that led to her hospitalization and shocking death. Faith, four years-old, had been attending pre-school since she was three, and this year, she was going five days a week, on a half day schedule. Things were going well, according to the family. She enjoyed using her gait trainer in physical therapy, and was starting to learn how to use a communications board.

“We knew what she was trying to say to us about 90% of the time,” said Danielle, as Makayla, Faith’s sister, nodded along. Makayla noted that Faith said “No” a lot, that she could occasionally point to what she needed, and also said “Momma.”

“Momma” was Faith’s safe space. Faith was as close to her mother as a child could be, cuddling up in her mother’s arms every night as she fell asleep. Danielle, who has advocated passionately for her daughter since she was born, said Faith felt the most comfortable in her arms, and especially near her face.

“My love for Faith is unconditional. Faith gave me more faith. I loved being her mom. She made me want to be a better mom, a better person, she gave me joy, she gave me happiness. She just brought so much happiness into my life and our family's life. She literally was our world. Everything we did revolved around her. She is loved.”

- Danielle Johnson

When Faith first started school, Danielle had a hard time de-attaching from her. “I had a hard time trusting people with Faith so it was rocky in the beginning. I had to stay on top of the school about certain things,” she said, especially regarding Faith’s medical condition - Cockayne syndrome - and her disability accommodations. That’s been the story of Danielle and Faith: a mother constantly having to advocate for her child in a smaller town with less healthcare facilities for medically fragile children.

“Our local hospital didn’t even have supplies for her g-tube. That’s why we started taking her to UVA in Charlottesville, about two hours away. They offered pediatric specialties.”

She describes a hard pregnancy during the beginning of the COVID pandemic, marred by concerns about Faith’s growth in utero.

“When Faith was born, they didn’t even put her in the NICU. I was surprised because she was only 4 lbs, 10 oz,” said Danielle. “They told me she had really strong lungs.”

Immediately, Danielle noticed that Faith’s feet turned inward. At home, she began having problems drinking formula, often vomiting. She had a swallow study and an upper GI study, and was diagnosed with pneumonia, causing Danielle to have to hold her for three months to avoid aspiration from lying down. It was determined that Faith’s laryngeal cleft was the cause of her not being able to keep any formula down.

“I slept on our recliner chair over there,” she said, pointing across the living room. “For three months straight, I held Faith up the entire time.”

Faith also developed bilateral hearing loss, and needed hearing aids at age 1. This was, however, Makayla’s favorite memory of her sister. "When Faith first got her hearing aids, she was crying but as soon as she realized she could hear with them, she instantly made cooing noises, laughing and talking with us."

Danielle was worried about Faith and advocated for extensive genetic testing. At one years-old, following a whole exome sequencing test, Faith was diagnosed with Cockayne syndrome, and specifically mutations in gene ERCC6/CSB.

“The diagnosis surprised us. Given the fact that our older daughter Makayla was healthy, we were struggling to understand how it could have happened. The genetic counselor kept trying to describe the disease to us but it was too much at the time. We were just trying to process the news. We didn’t expect it,” said Danielle.

Over time, the family learned how to adapt to other medical challenges they faced with Faith. Faith had surgery to get a G-tube to help her with feeding and weight gain, followed by a GJ-tube once her weight had plateaued after a bout with the flu.

“We had a regimen and she was doing well,” said Danielle, noting that they had been prepared for Faith’s challenges, and had moved her toward stable health especially once they figured out how to manage her acid reflux and other GI issues, as well as the occasional seasonal viruses.

The family’s day-to-day was colored with love, laughter, and routine. “Faith did enjoy sleeping in,” Danielle said, laughing, but also liked to have set times for her baths, therapies, feeding, and bedtime. Faith’s favorite television show was “The Boss Baby.”

“Oh she loved that show! She would laugh so hard,” said Danielle. She also enjoyed playing with her blocks, light-up and musical toys. She loved lights, and water. She enjoyed being in her bath, and also the pool.

Danielle said on cool days, when it was not too hot and not too cold, and especially when there was a nice breeze, Faith enjoyed being outdoors on the family’s porch, listening to the birds.

Makalya fondly remembered a family trip to North Carolina, to the beach. They took Faith to the beach, but not for too long because of her photosensitivity. “She loved the water. She really enjoyed the beach,” Makayla said. Later, she said they went to Duck Donuts, which had recently opened up in that area, and laughing, talked about how Faith tried a donut. She said her sister always loved to try a little bit of food at new restaurants.

"Everyone loved Faith that came into her life. Even people that Faith had never even met. She touched their lives.”

- Danielle Johnson

Makayla recalled a family friend - Raven - that Faith had a special bond with. “We didn’t know what it was but Faith really really loved her, and always wanted to hug her.” Faith expressed her love for Raven by pulling on her earrings, hugging and kissing her, and laughing nonstop with her.

“Faith is such a gigglebox. It’s so cute. She was also starting to warm up to strangers, and playing with other children.”

Was there anything that beloved Faith didn’t like? Danielle and Makayla laughed and said, “Well she did not like play doh! She didn't like soft textures. She liked the rough stuff.” Makayla added, “If you did something to her that she didn’t like, if you tickled her for instance, she'd laugh at first but then she'd get back at you, she’d start swinging her arm at you.” Smiling, they also recalled Faith’s contentious relationship with the family cat, and how she would try to pull her hair too.

Danielle said she doesn’t wish what happened to Faith on any parent. She describes being severely traumatized by last week’s events, from the incident at school and the hospital stay. Due to ongoing legal matters, we are not describing the details of what happened, beyond the fact that Faith’s GJ-tube became dislodged at school, causing the family to have to rush her to the hospital, where she passed away a few days later, on February 22, 2025.

At UVA Health University Hospital, Danielle said she remembers when Faith’s lips and nose started turning blue. She had begun to be worried a few days before and raised concerns when she observed Faith’s breathing to be heavy and knew that “something wasn’t right.” On the day she passed, Faith coded, and her heart stopped, but the doctors brought her back. However, she then coded again, and the doctors weren’t able to bring her back. They began doing chest compressions, and as blood filled Faith’s lungs, the family made the difficult decision to let her go. “We didn’t want to let her go, but we didn’t want her to suffer,” said Danielle, sobbing.

“Faith should not have passed away like this. She wasn't supposed to go this way. As a mom, I advocated to the 1000%. I know I’ve done enough but I still feel like I let her down..that guilt is there,” she said.

The family is working hard to advocate for their daughter and to find answers.

Meanwhile, they are dealing with the intense grief of losing their beloved four year-old. “I miss her. Every moment with her was the best memory of my life,” said Danielle, her eyes tearing up.

***

Our global community of families impacted by rare disease stands in solidarity with the Johnsons, and sends them our most heartfelt condolences.

Visitation and services for Faith will take place on March 8, 2025 in Winchester, Virginia. For more information and to send a message of support to the Johnson family, please visit here.

To read recent news stories about Faith, please visit here and here.

To sign the family’s petition for change and demand for answers, and to track updates on their fight for justice, please visit here.