Celebrating Love, Strength & Rare Beauty
This February, as we honor National Rare Disease Day, we are proud to share the story of Anna Pare, a devoted mother, talented musician, and fierce advocate for her daughter, Swara. Their journey is one of resilience, love, and the power of community.
Meet Anna & Swara
Anna and her husband, Ravi, have called Kailua, O‘ahu home for over a decade. Together, they are raising their two children, 4.5-year-old Siddhartha and 2-year-old Swara, surrounded by the beauty of the islands.
As a professional cellist and music teacher, Anna has spent years bringing music to life, performing with the Hawai‘i Symphony Orchestra and the all-female Kai Quartet. However, since becoming a mother, she has shifted her focus to caregiving, slowing down her performing career to be present for her keiki.
Their days are filled with ocean adventures, music, and home-cooked South Indian meals made by Ravi. And in the center of it all is Swara—a bright, spirited little girl who charms everyone she meets.
"She has a magnetic personality with old-soul energy. People always say she looks into their eyes like she’s reading their soul. She is on a personal mission to greet every face she meets with a ‘hi’ and a wave."
A Diagnosis That Changed Everything
Shortly after her first birthday, Swara was diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration), an ultra-rare neurodegenerative genetic condition caused by a mutation of the WDR45 gene.
💜 There are only about 500 known cases worldwide, and Swara is the first person diagnosed in Hawai‘i.
BPAN is a progressive disorder with many unknowns. It affects motor skills, cognitive development, and can cause seizures. Because there is no cure, families like Anna’s focus on therapy, support, and finding ways to help their children thrive.
"At seven months, we started noticing Swara was behind on milestones. We weren’t too concerned at first, but then, at 11 months, she started having strange movements that turned out to be seizures. After a hospital stay and numerous tests, genetic screening confirmed BPAN."
Navigating Life with Love & Resilience
The first year after Swara’s diagnosis was filled with specialists, hospital visits, therapy sessions, and even mainland medical travel. The learning curve was steep, but through it all, Anna found strength in music, community, and the support of loved ones.
"Balancing life with two littles is already hectic. Adding complex medical needs is a whole other layer. But we are so grateful for the therapists and specialists who have helped us find our new normal."
One of the biggest sources of light for their family? Music.
Swara’s connection to music is profound—it brings her joy, calm, and even helps her develop communication skills. Inspired by this, Anna launched Allegro Keiki, a music series for young children and families.
"Music lights Swara up like no one I’ve ever seen before. Song and rhythm have helped her access receptive language. It’s been a huge inspiration for me, leading me back to my own love for music while creating something meaningful for our community."
The Joy of Small Wins
For Swara, every milestone is a hard-fought victory. Whether it’s a new movement, a gesture, or a simple interaction, each step forward is a celebration.
"She works incredibly hard every day to do things that most of us take for granted. Seeing her achieve something she’s been working on for months is pure joy."
Her story is a reminder to cherish every moment, every smile, and every wave hello.
Swara’s Coco Moon Favorites
Coco Moon has been a small but special part of Swara’s journey. She loves her Coco Moon dresses, finding comfort in the soft, stretchy fabric.
"When we traveled to the Children’s Hospital of Philadelphia—the only BPAN-specific clinic in the U.S.—Swara wore her Coco Moon Surfing ABCs dress to bring a little piece of home with her."
And big brother Siddhartha? He loves to match with Swara and is already requesting family PJs for next holiday season!
Spreading Awareness for Rare Disease Day
This February 28th, we honor Swara and every child and family impacted by rare diseases. Awareness and support can change lives.
Ways you can help:
🌿 Learn about BPAN and other rare diseases.
🌿 Support families navigating rare diagnoses.
🌿 Donate to organizations funding research and therapies, such as Beat BPAN.
To Anna, Swara, and their beautiful ‘ohana—thank you for sharing your journey and reminding us all to cherish the magic in every moment.
💜 Join the conversation and spread awareness for Rare Disease Day by sharing Swara’s story!
