Breanna Lowe reflects on her son Caesyn's journey living with a rare medical condition and how Parkview Hospice supported their family while helping him experience the joys of childhood.
Choosing quality of life
Caesyn was born a healthy, happy baby in 2021. At six weeks old, he began experiencing unexplained fevers, leading to a year and a half of diagnostic testing. At 17 months old, he was diagnosed with Aicardi-Goutières syndrome, a rare, neurodegenerative disease with no cure.
By age four, Caesyn was seeing 17 specialists. When a palliative care physician raised the idea of hospice, Breanna wasn’t ready to hear it. At the time, hospice, to her, meant the end of life. Though hesitant, she said yes, not because Caesyn was dying, but because she wanted him living.
“What you learn from going through hospice is it's not just the end of life. It is quality, it is comfort,” Breanna said. “I focused entirely, throughout my caregiving years of Caesyn, on quality over quantity—and quality of life.”
Hospice allowed Caesyn to stay home, trading endless appointments for the freedom to simply be a kid. That flexibility carried the family to Disney World that spring on a long-awaited trip through the Make-A-Wish Foundation®.
He returned home from Florida and, as if he’d been waiting for one last adventure, his body began to let go.
A mother’s advocacy, a team’s partnership
Breanna studied her son’s rare disease like a researcher, authoring a formal paper proposing subcutaneous infusion therapy for at-home comfort management. She partnered with a palliative care physician from Cincinnati Children’s Hospital to help make it possible.
As Caesyn’s final days grew unpredictable, his rare disease made symptoms difficult to manage. Breanna advocated through that stretch, sharing her observations with the Parkview Hospice team—feedback now shaping how the team approaches comfort care for children with complex conditions.
Two days before Caesyn died, the infusion she had championed was placed, and he passed peacefully. “Having me not being the only one advocating for him was a blessing, because I had spent his whole life being the only one advocating for him,” Breanna said. “To have a team of medical professionals behind me saying, yes, we think this is right too—that was a blessing.”
Off to play
As symptoms progressed, Breanna sensed Caesyn's final days were near. On that last day, his small body finally tired from the fight, she climbed into the play yard beside him in their living room, laid her head against his chest and told him to run.
She later wrote about that final moment on his Facebook page, which more than 30,000 people followed from the beginning, and closed with five words: "My sweet boy was off to play."
This message reached the Parkview Hospice team within Caesyn’s first week of passing. Angie Eller, hospice clinical supervisor, called Breanna with an idea to honor Caesyn publicly. Breanna didn’t hesitate. Hospice co-worker Amanda Funk spent the weekend turning that idea into a chalk mural for the Parkview Packnett Family Cancer Institute’s annual Chalk the Walk event, carrying Caesyn’s name alongside the words that had helped carry his mother through her worst days.
The entry won first place, and the recognition came back to the family in the form of something even more lasting: a hand-painted canvas of the portrait, given to the family in honor of Caseyn.
“For me, it was deeply personal,” Breanna said. “The fact that they saw the value in my words, and used those exact words, was very special to me.”
Dispelling a myth: Hospice is not giving up
Of everything Breanna learned, one lesson stands above the rest. Choosing hospice for your child is not the same as giving up on them. It means choosing a different kind of care—one centered on comfort and quality of life rather than a race against the disease.
She saw the misconception play out in real time on Caesyn’s Facebook page. “When Caesyn went on hospice, the number of people who say, ‘you’re giving up on your child,’ is insane,” she said.
She explained that part of the confusion is that pediatric hospice looks different from adult hospice. “Adults don’t receive concurrent care,” she said, “but with children, they think that you’re just choosing not to treat anything.”
She shared that wasn’t Caesyn’s experience. One of the first treatments he received from the hospice care team was antibiotics and steroids for a respiratory infection, just like any other sick child. “Children on hospice can still receive current care,” Breanna said. “That’s something I tell people all the time.”
Breanna made it her mission to close that gap, documenting Caesyn’s day-to-day hospice experience openly with his quality of life, not decline, at the center of it. She said even hospice nurses from other organizations thanked her for the education she was sharing, because, as she put it, “when families share that experience, it makes it more real to other families who are going through something similar.”
That clarity is also what lets her look back without regret. “I did everything in my power to advocate for him,” she said. “I feel like that was my job as his caregiver and his mother.”
A legacy that keeps giving
Caesyn’s story didn’t end with his passing. Breanna is now establishing a nonprofit in his name to walk alongside other Northeast Indiana families facing child loss or terminal illness, and continues partnering with Parkview Hospice to expand the team’s understanding of complex, rare pediatric conditions.
“Caesyn’s legacy lives on through Parkview as well,” she said, “and that means just as much to me as if it happened when he was alive.”
Learn more
For more information about hospice and palliative care services or a patient referral to Parkview Hospice, please call 260-368-5111 or 260-368-5146. You can also complete our online form here.
