In the wake of the heartbreaking loss of their infant daughter, a local couple is channeling their grief into action.
Sedona Wan de Guzman was a cheeky, loving and clever baby that came into the world under difficult circumstances—she was born three months prematurely, immediately suffered a hemorrhage in her brain and was diagnosed with cerebral palsy.
Cerebral palsy is a motor disability that affects people’s ability to control their muscles. Symptoms vary from person-to-person, and can include issues with posture, movement, vision, speech, hearing and more.
Despite the ongoing medical issues this caused, her parents remember that she was a remarkably easy going child.
When her mom would take Sedona along to pick up her older brother from preschool, she would blow kisses to his teachers. She loved pretending to be a lion, practicing her tiny roars on her loved ones.
Videos shared by Sedona’s mom, Amy Wan, on YouTube, show the persistent baby learning to sit, crawl, roll over and stand with the help of dedicated medical professionals. Her parents spent large swathes of time researching any and all ways to help their daughter, shuttling her back and forth between specialized doctors and therapies.
Despite her health diagnosis, Sedona made strides in her development that doctors considered miraculous.
Although both Sedona and her family continued to work hard to reach new milestones, she still struggled with her health. The medication Sedona needed to treat seizures left her immune system weakened. Although her parents did everything they could to keep her healthy, including pulling her brother out of preschool, she somehow caught meningitis.
The disease ended her life within 24 hours of becoming sick, and Sedona passed away on Jan. 23.
Wan and her husband Jonar de Guzman received an outpouring of support from their community after the devastating loss of Sedona. Within a day their home was filled with flowers—which de Guzman is severely allergic to.
“We had to put the flowers outside,” de Guzman said. “I’m like, ‘What are we doing? There’s so many flowers coming in. Let’s just tell people to donate.’”
In Sedona’s honor, her parents created a GoFundMe campaign to raise money for children with similar health conditions. Sedona’s parents recognize that the life-changing treatments and therapies they were able to provide for her aren’t accessible to many families. Wan still remembers the other families she met in the Neonatal Intensive Care Unit (NICU) during the first 6 months of Sedona’s life.
“I saw many other families, […] there’s moms who couldn’t even be with their babies because they had to go work, to put food on the table. There’s families where they don’t speak English,” Wan said. “And I live on a lot of these medical moms’ Facebook groups, and a lot of these women have been forced to become a stay-at-home mom, so they become single income. They live hours away from the nearest children’s hospital. And sometimes they just don’t have either the geographic or financial resources that we have been so lucky to have.”
Wan and de Guzman are looking at three different ways to use the money: either providing support and resources for families who are leaving the NICU, creating online training courses to teach parents physical therapy exercises they can do at home, or partnering with one of Sedona’s doctors to create an online space to train other physicians in the specialized treatments she benefited from.
“I think that channeling grief into something that is positive and something that can help other kids like [Sedona] is worthwhile,” de Guzman said. “And I’m not trying to take away from our grieving process, of course, we are still devastated. It’s still shocking to us that she’s gone. But, you know, there’s other kids out there that could greatly benefit from what Sedona experienced in her short time here.”
