March marks Rare Disorder Month, with March 21 also recognising World Down Syndrome Day – a time to acknowledge both rare and more common chromosomal conditions.

In Te Puke, two families have discovered an unexpected and heartwarming connection that is changing lives.

Marissa Mason’s 5-year-old son, Blayde Arnold, lives with Emanuel syndrome – a rare genetic condition caused by an extra derivative chromosome 22.

With only a few hundred reported cases worldwide, the disorder can involve low muscle tone, feeding and breathing challenges, and often a cleft palate.

“When he was first born, we were told he was the only one,” Mason said.

“Then I found a family through a Facebook group for Emanuel syndrome, and I realised we weren’t alone.”

Ruhani Chauhan is 5-year-old Blayde Arnold’s support worker. Photo / Natalie Murdoch

Those early months were isolating and overwhelming. Mason credits one particular nurse with changing the course of Blayde’s care.

“A nurse sat with us that night, heard our story, and helped us avoid a tracheostomy. That moment felt like a lifeline.”

Determined to become her son’s strongest advocate, Mason sought support through Parent to Parent New Zealand, a pan-disability organisation that connects families of disabled, health-impaired and neurodivergent children.

Through workshops and support groups led locally by Bay of Plenty co-ordinator Jane Ford, Mason gained the confidence and tools to navigate complex health and disability systems.

“I was so exhausted at that first meeting I could barely speak,” Mason recalled. “Jane just said, ‘It’s okay, whenever you’re ready.’”

Five-year-old Blayde Arnold lives with Emanuel syndrome and has help with building muscle tone. Photo / Natalie Murdoch

Armed with advocacy training, Mason successfully pushed for Blayde’s transverse cleft surgery – typically performed at 5 months – after worrying about delays affecting his development.

“Within two months, the surgery was booked. It was nerve-racking, but I felt prepared to speak up.”

But it was another Parent to Parent workshop that sparked a connection no one could have predicted.

At a “Navigating the System” session, Mason met Neena Chauhan, whose daughter Ruhani Chauhan, 18, has Down syndrome. Mason watched as Ruhani performed a solo Indian freestyle folk dance and later danced with her Inclusion group.

“It just blew me away,” Mason said. “She’s so talented, and her mum is inspirational.”

Ruhani Chauhan helping 5-year-old Blayde Arnold and his mother Marissa Mason with Blayde’s Sunday physiotherapy sessions. Photo / Natalie Murdoch

Months later, at Parent to Parent’s “Beyond School” workshop at Te Puke High School’s special education unit, Mason arrived with an idea: offer a disabled student work experience helping Blayde with his Sunday physiotherapy.

“I thought it would be great to give a young disabled person their first job experience, and for Blayde to interact with more people,” she said.

“When we go to physio, sometimes there are three therapists working with him. With me and Ruhani, we can get so much more done.”

Ford suggested Ruhani for the role. What followed was her first-ever paid job.

Ruhani had already volunteered at “Blayde’s Big Day Out” – a November fundraiser organised by Mason to support a three-week intensive therapy programme.

The event exceeded expectations, raising $13,300 – well above the $10,000 target – enabling Blayde to attend an intensive at the Centre of Movement in Rotorua.

Blayde Arnold was chosen to ride in Santa’s sleigh in the 2025 Te Puke Christmas parade. Photo / Supplied

By January, Ruhani officially began her Sunday role.

“She’s been so helpful – it’s been amazing,” Mason said. “She gets him laughing, gets the giggles out of him. We need women power to hold Blayde into a standing position. She’s everything we need: helpful, caring and adored by Blayde. The connection is fantastic.”

Ruhani beams when she talks about her work.

“I do some reading, and help him with standing, sitting, kneeling and rolling. I love this job. I make him laugh and smile. It makes me feel happy that I can do this.”

Beyond her support role, Ruhani participates in hip-hop dance at Mount Maunganui, performs with an Inclusion dance group, and has just started work experience at Te Puke’s Daily Cafe – continuing to break down barriers around employment and capability.

Blayde, who recently turned 5, has made steady gains. He is eating, sitting, grasping objects and building resilience through group physiotherapy sessions. Mason hopes he will begin attending school later this year.

At home, the partnership continues beyond physio. Ruhani helps prepare Blayde’s specialised meals and milk as part of his complex dietary needs.

For Neena, seeing her daughter employed has been deeply meaningful.

“This is Ruhani’s first-ever paid job. We are so thankful for the opportunity. Jane and Marissa are so kind and supportive and because of them she feels valued. Thank you for believing in her.”

Ruhani Chauhan checking off the exercises she is helping 5-year-old Blayde Arnold with every Sunday. Photo / Natalie Murdoch

Mason continues to document their journey through “Blayde’s World”, an online platform supporting other families living with Emanuel syndrome.

“Blayde’s World serves as both a guide for other families and a record for us, showing how far we’ve come.”

In a world where rare disorders can feel isolating, the partnership between Blayde and Ruhani is a powerful reminder that connection, advocacy and community can transform lives.

Resources for families: