Bermuda, You Left Us Breathless

by Jo Kaur, Founder of Riaan Research Initiative

“You can go to heaven if you want. I’d rather go to Bermuda.”

(September 11, 2025) - Five days before we left for Bermuda, on our first international trip with Riaan and Jivan (“Lu”), I looked at a map of the world. I knew we only had one more week before Richie returned to work, and so far, we hadn’t gone on any plane trips this summer. We had just returned from out of town after a challenging visit to a children’s hospital/specialty clinic in Pennsylvania, which wasn’t exactly fun in the sun.

As a methodical trip planner, I was about ready to give up. I figured we didn’t have enough time for anything fancy, and it was probably better to stay nearby. Riaan had not done great on the car ride and trip to Pennsylvania, so it would be too much to even think about air travel, much less international air travel.

Defeated, I began scrolling through my phone, and that’s when I started texting with a friend, a dad of a child with another horrific rare disease, who told me about how they had just returned from yet another exhilarating trip to Hawaii. He said they’d gone there for their son’s Make-a-Wish trip but loved it so much they went back a few months later. They didn’t regret a thing and stayed at a resort with all of the amenities they could need.

Hmm, I said, as the wheels in my head started turning. But where would we go that wasn’t such a dreadfully long flight (3 hours max!)? I had been tossing out Nova Scotia as a possible idea all summer. Richie and I had traveled there before we had kids and loved it, but I don’t know, I also kind of wanted to go somewhere totally new. I felt like I needed some re-energizing as well. It’s been a summer. Hell, it’s been a year - a few hard years.

Our trips are a lot of work. Maybe it was time to also finally treat ourselves, as parents. I know another CS family from Australia who had traveled to Fiji and lived that resort life, and I thought of them.

Pulling up the world map again, I stared at the Caribbean Islands. Shifting my eyes north, I triangulated onto Bermuda. I’d always dismissed Bermuda because tourists aren’t allowed to rent cars - which I thought might be too hard for us - and also it’s just so damn expensive. I did not know anyone who has gone there, believe it or not, and yet it was less than a two hour direct flight from JFK.

Ping. My friend was texting me about how his mother-in-law had wanted to visit Hawaii but never got there during her life. That settled it. There was no time to waste. I felt a strong yearning to live, to do something drastically different (for us). Last year, we had almost gone to Belize: this year, it seemed like we’d try for Bermuda.

A plan began to take shape. I called Richie, who said he’d be open to it but only if we booked for a few days out as he wanted some time to prepare. I booked the flights, secured the travel insurance (to include pre-existing conditions!), and then spent the next two days trying to figure out where to stay. Airbnb? Hotel? Resort? And what part of the island? I researched hotels and vacation homes, studied online threads, and made contingency plans to ensure a smooth, healthy trip for everyone.

I think the parent who is not the trip planner is usually surprised by how much work is required for travel. We can’t just show up!

Not with kids. Not with a child with Cockayne syndrome!

A few days later, we were off to Bermuda, for Riaan and Lu’s first ever international trip. What adventures await?!

The night before we left, I fell into despair, publishing one of the darkest posts I’ve written, a climactic and cathartic release of the grief and anxieties I have about Riaan. I worried the trip to Bermuda was a bad idea and that Riaan wouldn’t be able to handle it.

Too late now. Everything is booked. We’re going.

Early the next morning, we raced our way to JFK, stood in the long check-in line, breathed a sigh of relief when the very kind airport employee ignored our bags being overweight, stood through the less lengthy TSA pre-check line where I sweet-talked the agent into not going through the extensive screening on our food/drink bag by oversharing my mom nerves (he just wanted to get rid of me!), and soon we were at our boarding gate with ample time to spare. We decided to park out near an empty gate, fed the kids, let Lu run around, and were on the plane before we knew it. The flight was on time and fantastic: after we ascended, it was only about one and a half hours long. The kids had some drinks, and even took a brief nap. I held Riaan, and Lu sat in the window seat.

As soon as they announced we were descending, we woke the kids up, put their shoes on, and secured our carry-on items. Looking out the window for our very first glimpse of Bermuda, as our pilot jubilantly announced the perfect weather we’d soon experience, we gasped in shock at the beauty of the azurean waters gently nudging a lush green strip of land. The plane shook fiercely, that famous Bermuda triangle spirit in full effect, as we approached the landing strip in St. George.

We were one of the first ones off the plane, which put us in a great position for Bermuda immigration and customs. Unfortunately, our gate-checked stroller was the last to come out, and we wound up in the back of a long line. This is when the kids began to crumble. Lu started crying and complaining that he wanted out and would not wait in a line - we desperately tried to calm using Bluey - and Riaan would only be held, crying if his brother cried. Everyone stared at us.

Eventually, we approached the immigration officer, and that’s when I realized I had messed up big time. I had filled out our arrival form online but apparently they needed one for each family member, not one per family. Cursing myself, I stepped to the side, and frantically tried to complete the long forms while Lu ran around causing chaos, trying to enter the country before we were admitted, and Riaan cried at the top of his lungs in reaction to his brother. Finally, we submitted the forms, the officer stamped my passport, Richie’s passport, and Lu’s passport, and handed them back to me. When he got to Riaan’s passport, suddenly there was a long pause. He left his counter, and walked over to another officer where they had a stern discussion that seemed to last an eternity.

What in the world is going on? Just stamp his passport so we can get going already!

He came back and patiently explained that since it had been so long since we’d deplaned, that our flight was no longer active in the system. The three of us had made it through but not Riaan. Not to worry, he said, it would just be another minute or two. Not long after, he stamped Riaan’s passport, and off we went.

Despite our tomfoolery, the atmosphere at immigration was very relaxed. There was no armed official glaring at us, it was extremely family friendly and inviting.

We made our way to baggage claim - our bags were already there and waiting - and suddenly Lu did not want to leave the airport. We had no idea why, but Richie carried a crying Riaan, pushing our luggage cart, and I carried/dragged a kicking and screaming Lu, pushing an empty double stroller and our carry-on luggage. Customs didn’t even stop us.

Customs tried asking a question, I think it was about where we were staying but the kids were screaming so loudly that no one could hear each other. Finally the officers waved their hands, and shouted: “Just go! Just go! Welcome to Bermuda! Please go!”

We found our ride waiting for us - it’s always cool to be greeted by a handsome, charming fellow holding a sign with your name on it at the airport - and out we went. As soon as the sliding doors opened, and we entered Bermuda, the kids quieted immediately, humbled by the heat that had washed over us.

It was high noon. Humid, hot, and intolerable. I immediately looked at Riaan who was pale, and remembered that he cannot sweat because of his condition. I had also forgotten to put sunscreen on the boys during the flight! Sweating myself, I began to panic.

What was I thinking bringing him to this sauna? We’ll never be able to go outside! We raced to the van, and I asked the driver to turn the AC on max. I grabbed the water, made Riaan drink some, put some on his back, neck, and face. As the cool air hit us, we all calmed, and soon we were on our way to our seaside resort in central Bermuda, in Warwick, gazing in wonder at the tropical scenery laden with postcard perfect palm trees all around us, winding our way past the colorful homes and buildings.

A brilliant smile, inspired by the lively conversation from our driver, began to take shape on our travel weary faces. We drove by Bermuda’s most famous and oldest pub, The Swizzle Inn, and I remembered reading about it just the day before. How exciting! We passed the mysterious Crystal and Fantasy Caves, through St. George and Hamilton, and finally were on our way to Warwick.

I fed Riaan a bean and banana puree as Richie held him (no car seats on this trip), and he ate the entire thing. Lu, sitting on my lap, ate a peanut butter and jelly sandwich. Another pro tip - we didn’t bring car seats but I did use our car seat bag for Riaan’s high chair, a beach chair, his mat, and also diapers - it worked like a charm, thankfully, and we were able to check it in for free.

Twenty-five minutes later we were at our resort.

We have never stayed at a more stunning place as a family. Greeted with Bermuda’s renowned hospitality, rum swizzle and tropical juice welcome drinks, we entered our sanctuary. The staff (we were good friends by now through email!) had decorated the room with balloons - Riaan’s favorite - in anticipation of his arrival and knowing what this trip meant for our family. They had also stocked our fridge, and kitchen with pre-ordered groceries (another pro-tip!). In Bermuda, you can get (extremely costly) groceries delivered through an app, and it’s amazing. Our suite was enormous with two ocean-facing balconies. It felt like arriving home in paradise.

We rushed the kids into the luxurious walk-in shower, and I cooked a pasta for lunch.

A storm moved in, and suddenly a tropical rain descended from the heavenly skies. It was windy, cool, and utterly gorgeous - the humidity and heat completely washed away.

The weather remained this way the rest of the trip: mornings and late afternoon to evenings were optimal weather for Riaan. From around 11 - 3 pm, it was fairly hot and sunny/exposed, so we usually tried to stay indoors unless cloudy and we could squeeze in some infinity pool time.

Thirty minutes later, with a cup of espresso, I went on a Zoom meeting for Riaan Research Initiative and made everyone jealous of my surreal background (it looked like a filter!). The work to develop a gene therapy for Cockayne syndrome doesn’t stop despite the travel! Not at this critical stage. I wound up having meetings every day - during the business week - with our preclinical, clinical, manufacturing, and consulting teams but I didn’t mind. There’s nothing more important: I am grateful for every opportunity to move this work forward.

After lunch, we finally got the kids down for a brief nap, allowing us to unpack, relax, and take in the views.

We’d made it.

We played in infinity pools and the sea, ate at the most delicious restaurants, explored a cave (where Lu tried to jump into the natural pools), and met some incredible traveling families and locals. We switched resorts mid-way, and moved across the island for harbor views, to experience riding the ferries, and enjoying the island’s urban life: Hamilton, Bermuda. I had the most delicious vegan pizza I’ve ever had in my life in Hamilton, at a stylish, hip place called The Pickled Onion. I’ve never seen a waiter handle kids better than the one we had at this restaurant.

Riaan ate, drank, and slept well throughout the trip. He was full of good health, color, and smiles. He rarely complained and was very aware and lively.

Every Bermudean we met treated Riaan with such genuine love and kindness, waving hello, shaking his hand, smiling and talking to him. In the US, people either ignore him/us, or occasionally give us stares. The genuine kindness and outreach from strangers is rarer. In this way alone, I felt connected and thankful to Bermuda.

One morning we took a taxi to Elbow Beach, and I’d forgotten to bring along water. The cloudy morning quickly gave way to a bright, merciless sun. We spent a little time in the waves but decided it was too exposed for Riaan, and without water, we were taking a big risk. We walked back to the main road, and I couldn’t get a cab on the rideshare app; however, we were quickly able to hitch a ride back to the hotel. We didn’t have to wait for long: someone saw us stranded and was more than happy to help - that’s how it was the entire trip. Everyone in Bermuda felt like family.

For us parents, this trip was also more relaxed than any we’ve ever taken. Our hotel suites all had kitchens, washers, dryers, a separate bedroom and living area, along with balconies/patios, and we had access to the hotel concierge service to call taxis and get tips, plus the restaurants, room service, and amenities including the many pools. None of the resorts were overcrowded: we usually had the amenities to ourselves or only a few other families with kids, allowing us all to play and hang out together. We have never felt so pampered.

One afternoon, following a wondrous tropical rainfall, we took a taxi to Horseshoe Bay, not far from our hotel. Horseshoe Bay is Bermuda’s most famous pink sand beach. It is normally packed, especially with boat cruise crowds but today we had the entire place mostly to ourselves. We saw schools of fish in the water, the (subtle) pink sand that makes Bermuda’s beaches world famous, and the iconic formations in the water that shape the dramatic scenery. We experienced the embrace of the cerulean waves - the sea in Bermuda was always inviting and warm - and were on the lookout for the Portuguese man o’ war (thankfully we didn’t see one!).

As Lu and I splashed in the water, Riaan was more timid. He enjoys pools more than the sea. He got his feet wet, but was more interested in being held by his dad and laughing at Lu’s antics.

One thing that I noticed about Riaan is that usually whenever we go on outings, he’s always eventually gesturing to leave after a short while. Never in Bermuda. Not once. He enjoyed every single outing, and never tried to get us to leave.

During one particularly rough wave, Richie grabbed Lu’s hand and I met Riaan’s eyes. I was caught off guard as he pulled me into a moment, hugging me with so much love and affection, gazing deep into my eyes, that the beauty of the sea completely disappeared. Riaan often shows me profound love but this moment exceeded anything I have ever experienced before. We felt connected, in a cosmic way, mother and child, our embrace lasting several minutes.

Here I was standing in the scintillating waters of the Atlantic and all I could think about was how no other human being has ever loved me and shown me how much they love me like Riaan.

To know and experience a love like this - from my sweet boy - is the closest I've gotten to the divine.

I’ll never forget this moment and if we ever return to Horseshoe Bay, I’ll be sitting in the sand, thinking about it. The memory and moment Riaan and I created was so tangible that I have no doubt it has a permanent home in the pink sands of this beautiful place.

One night, I cooked tofu vegetable curry with brown rice and yogurt, and fed the kids on our balcony (Riaan’s was pureed). Richie walked to the gas station about ten minutes away to pick up a few essentials. When he came back, we went down to the restaurant for some ice cream. A storm was brewing, and all of the diners had moved under a canopy. We saw bolts of lightning shoot into the sea, and heard the faint sounds of thunder.

The restaurant staff tried to steer us under the canopy as well, fearing the skies would soon burst open. We said we were fine: the children were simply delighted. As we waited for our ice cream - to go - Riaan lifted his face up toward the breeze, smiling from ear to ear. Lu ran around the pool, holding my hand, squealing in excitement. The air was palpable with electricity, an intensity, an energy more ancient and powerful than all of us. The wind was fierce, and while we felt heavy drops every once in a while, the rain held off. The waves pounded against the shore.

As we returned to our suite, Richie realized he’d forgotten an entire bag of items at the gas station. Immediately, I volunteered to go get it. “Are you sure?” he asked. “It’s really dark, there’s a lot of cars, and the sidewalk isn’t always there.”

“Yes, yes!” I said. “Will the kids be ok?!” Lu said yes, he was eating ice cream. Riaan was calm. I practically ran out the door.

On the ten minute walk to the store, I was transported to another world. It was just me, the darkness, the swaying palm trees, and the elements. I was in rapture.

I carefully crossed the busy street, weaving back and forth to stay on the sidewalk, sometimes stepping onto the grass or even the road. Cars, motorcycles, and scooters raced past me, so close I could feel the tingle. I truly felt like I was on a tropical island in the middle of nowhere.

In the store of the gas station - it could have been from any part of the world, nothing particularly Bermudean about it - I picked up the bag Richie had left behind, thanked the cashier with probably more excitement than was appropriate, and made my way back, walking more slowly this time. The rhythm of the wind felt intoxicating. I shouted into the breeze how much I loved Riaan and Lu. I thought about how words alone are not enough to convey the depth of what I feel for my children, what we feel for people we love. Even a hug, a kiss, isn’t enough.

Maybe this is the burden of my soul where I feel so deeply but lack the tools to adequately express it.

Nevertheless, on this walk, I felt alive, beyond the usual constraints of motherhood. I was back to being a person, and in the most basic form. Being alone, during a thunderstorm on a Bermuda night, had transformed me into a being of pure love, joy, and happiness. Just another spirit walking on an ordinary Thursday evening, through the thick black darkness, as the ocean and the air raged in synchrony, making my way back to a fancy hotel room.

As the wind whipped against my cheeks, I felt safe and protected in a way I’ve never felt in the States. Skipping along the road, I smiled. Nothing could harm me here. There was no pain, no grief. Only the nectar of bliss.

On our last night, we rode ferries and danced along the dock, listening to the music from the party boats in the harbor. Eve’s “Let Me Blow Your Mind” was playing full blast. Lu is now obsessed with the song, and refers to it as the Bermuda song, asking me to play it daily.

At the airport, we were able to clear US immigration and customs before we boarded. I was also able to use my credit card’s Priority Pass to access the airport lounge and feast on free lunch and drinks. Riaan for the first time grabbed a cookie, put it in his mouth, chewed, and successfully ate half of it! Lu was cheering him on, he was so happy to see his brother eat solid food instead of just a puree. Kids notice everything.

On the flight back, as the plane lifted above Bermuda, we all looked outside the window with sadness, but also fatigue. It was a good trip. Riaan tried to eat another cookie during the flight but we hit such a rough patch of turbulence that it felt like we were on the Tower of Terror, and he gagged. Tightly clutching the kids, I felt mild panic. However, once we cleared that turbulence, and were out of Bermuda airspace, the ride was smooth, and the rest of the flight was uneventful.

When we landed, we were able to go right to baggage claim as if we had been on a domestic flight.

As soon as we got in, Lu asked to get back on the plane and return to Bermuda, expressing what we all felt. I achingly remembered the nights on the balcony, sitting with both children on each leg, watching the stars and hearing the indescribable sounds of the sea. There is magic in this world, plenty of it. We just have to remember to turn to it.

Does Bermuda miss us? Will Bermuda remember us? We will remember Bermuda, a paradise we never knew existed so close to us, so gorgeous, so effortlessly perfect.

For us, the only thing that disappeared into the mystery of the Bermuda triangle was a bit of our grief, replaced by unforgettable moments and joy.

The land of pink sands definitely blew our minds. While Riaan often enjoys trips, I would say he possibly liked this one the most, and I was thankful everyone stayed healthy during and after the trip. We pray, work, and fight for many more of these moments with our beautiful boy.

***

This October, Winty Singh will tackle 200 miles in a single day on his quest for the California Triple Crown. Every mile Winty rides brings us closer to a gene therapy that could give Riaan - and children like him - more days filled with precious family moments, joy, and adventures. Donate today and help make this life-changing and potentially life-saving research possible.