by Jo Kaur, Founder of Riaan Research Initiative
(February 29, 2024) - Today is Rare Disease Day, that time of year when we honor the millions living with a rare disease, and bring awareness to the urgent need for treatments. Thank you to all of the incredible families within the Cockayne syndrome and broader rare disease community who work hard utilizing the power of storytelling and advocacy to share our children’s journeys and needs with those who have the power and ability to make a difference. Thank you to the scientists working around the clock to build a cure, and to our dedicated donors who make this lifesaving option possible.
This Rare Disease Day, I wanted to describe a more uplifting aspect of the rare disease journey that we don’t talk about as much - traveling together as a family - and going on a huge adventure through the Make-a-Wish program. We just returned from Riaan’s wish trip to New Mexico, and I wanted to share the details of our trip below in case it may be helpful or interesting to others.
A Wish Upon a Star
It’s been a busy few months for our family as we prepared to embark on Riaan’s Make-a-Wish (“MAW”) trip to New Mexico. We’ve never traveled that far, certainly not by plane, and were extremely nervous. We had applied for MAW last spring, nominated by Riaan’s physician, and he immediately qualified because of his Cockayne syndrome diagnosis (this was a bittersweet feeling). As Riaan is non-verbal, it was challenging to figure out what to do for his wish. We have a strong sense of his likes and dislikes but this was his wish - THE WISH - and we didn’t want to get it wrong.
We initially discussed donating to Riaan Research Initiative to support our Cockayne syndrome gene therapy project under development at UMass Chan but we were told that donations were capped at $5,000. We opted to use the wish to give Riaan and our family an unforgettable experience instead. We dismissed Disney World (the most popular wish), and other theme parks because we thought it would be overstimulating and tiring for him, and the crowds would make us anxious (plus as a Florida native, I’m pretty over Disney). Home improvements were out of the question since we rent in New York City. That left travel, but to where? International trips were ruled out because we did not want to fly too far and who wants to deal with immigration and customs while traveling with a medically fragile child? We also looked at Maggie’s Wonderland, which seems incredible. It’s an amusement park for children with disabilities, in Texas, dubbed as the “one and only ultra-accessible theme park.”
Ultimately, we landed on New Mexico. I had been there several times and absolutely loved it, and it felt like it was just the right distance and landscape for a brand new adventure (Riaan had only traveled up and down the East Coast and experienced the glory of the I-95 corridor at this point).
Initially, we worked with the New York office of MAW to plan our week-long trip. MAW generously offered to cover six days, and five nights, and we were responsible for the remaining two days. Once we decided on New Mexico, they looped in that state’s office to assist. We were excited and scared but after speaking with the NM office, I knew we had made the right decision. The MAW staff has been so friendly and kind, and we are incredibly grateful to them for making this wish possible for Riaan and our family.
An Update on the Gene Therapy Program
Just before we left for New Mexico, we received promising news from the U.S. Food and Drug Administration (“FDA”) regarding the Cockayne syndrome gene therapy program. The FDA, in response to the pre-Investigational New Drug application sent by UMass Chan Medical School, by and large agreed with our team of scientific collaborators’ plan for toxicology studies and manufacturing the gene therapy drug. This was really exciting and a critical milestone! We are looking forward to next steps, and all of the work planned for this year. We hope to share more updates soon.
The Flights
Riaan has only flown once before his wish trip to New Mexico, and that was last fall when we flew to Florida to spend winter with my parents. We normally drive to Florida but I had family in town who were also flying back, and we thought it might be easier to travel with them for Riaan’s first flight. Unfortunately, it was a horrific experience. It was so bad I swore off flying forever after we got off the plane. The flight was delayed by a few hours, making the kids tired and cranky. The airport was packed; no one would let us through when we tried to pre-board, and we were new to the entire experience and carried way too many items, including a heavy car seat. We were hot, tired, and frustrated. Riaan cried hysterically nearly the entire flight, and kept demanding that I turn the seat light on and off. A passenger behind us kept loudly muttering, “Jesus Christ!” and shaking her head at him which really upset me. During the descent, he was in a lot of discomfort and kept clutching his ears. I had a throbbing migraine and kept popping Tylenol. On top of it, a few days later, Riaan and his little brother Jivan (aka Lulu or Lu) became sick from whatever they both caught on the plane. Thankfully it was only a cold (with fevers) but they took a few weeks to recover.
But we couldn’t drive to New Mexico. Flying was the only option. We hemmed and hawed over whether to go, if it was worth it. Traveling as a family has historically been exhausting and to be honest, not so much fun for us parents. What if he became really sick? After a fresh dose of perspective and an understanding that this was a gift and an opportunity that we would not likely come across again, we decided to give it a shot, for Riaan.
This time for the flight, we ditched the car seats but added another complication: a two-hour connection. There were no direct flights from southern Florida to New Mexico so we had a layover in Dallas, en route to Santa Fe. I planned everything to a tee but it was still a long day. In logistics, I find comfort as a rare disease mom. I studied terminal maps, located the nursing suites, contacted the airport, and even learned that Dallas offers Minute Suites for travelers to rent, which are private suites akin to a small hotel room inside the terminal. I walked around with a clipboard for a week, scratching items off my list.
We are enrolled in the TSA Pre-Check program and I strongly recommend this for anyone traveling with children, particularly a medically fragile child. It allows you to avoid the lines but also not have to remove your shoes or liquids from your carry-on luggage. We had also bought stroller clips from Amazon to hang some of our bags on which made such a difference, and freed our hands. We used a regular stroller for Riaan, and an umbrella stroller for Lu.
Our first flight, from southern Florida to Dallas, was early in the morning. Thankfully everything was on time, and we were able to pre-board without crowds, and depart on time. Our boarding strategy was to have Richie take Riaan and Lu on the plane first and set up their harnesses, while I folded up the strollers, placed them into stroller covers, gate-checked them, and followed with all of the carry-on bags. We had two child restraint harnesses for turbulence although we wound up holding both kids for most of the flight. We also had a child seat extender which was great because it allowed both Riaan and Lu to stretch their legs, and play with their toys without them falling to the floor. Another hack I discovered was Horizon’s Organic Shelf-Stable milk: it’s milk boxes that don’t need to be refrigerated and are excellent for travel days! Riaan was content most of the flight, enjoyed his toys, drank his milk, and only complained during the last ten to fifteen minutes of descent.
When we landed in Dallas, we took the kids to a private nursing suite near our connecting gate where we could feed and change them without worrying about crowds, and take a minute to hydrate ourselves and remove our masks. The only hiccup during this experience was when American Airlines changed our gate minutes before boarding to the other side of the terminal and we had a Home Alone moment running through the airport with strollers, bags, and kids. But we made it, and both kids did fantastic with the two flights!
Arriving in Santa Fe, New Mexico
Flying into Santa Fe, the highest capital city in the U.S., was absolutely breathtaking. The high desert and majestic Sangre de Cristo Mountains beckoned as we approached. New Mexico is known as the land of enchantment, and it’s easy to see why. I was worried about the impact of the high altitude on Riaan - the city is 7,000 feet above sea level - and had reached out to his doctors for advice beforehand. But thankfully he was fine throughout the trip although I personally felt the altitude at times.
The Santa Fe airport is the smallest airport I’ve ever traveled to but it was just perfect for us. We first picked up the rental car keys, and then met Reina, our MAW coordinator in NM, at baggage claim. “Welcome to Your Wish!” she greeted us with a huge smile on her face, wearing a t-shirt and jeans. We had been worried it would be too cold or snow but we were graced with the loveliest weather on our entire trip, ranging from the 50s to 70s. A lively, vibrant, joyful fresh of breath air - it was so good to see Reina (we had met via Zoom and phone while planning our trip). I stayed with the kids while Richie went to get the rental car from the parking lot outside baggage claim, and Reina helped him load it up with our luggage (we had three suitcases and two car seats plus our carry-on bags since our plan was to return back home to New York City after the trip). Reina had also brought items we/MAW had shipped to NM in advance of our trip including diapers, wipes, a high chair, a mat for Riaan, etc and gave them to us. We loaded up our van, and we were off to our Airbnb, a mere ten minutes away!
The House in Santa Fe
I’m often wary of renting someone else’s home because I’ve had negative experiences with cleanliness on the East Coast but there were little to no hotel options with a kitchen and a “New Mexico look” in Santa Fe. I’m so glad we opted for a home, however. The house MAW rented for us - a desert palace with incredible artwork - was on a hill overlooking the mountain and desert, with the most gorgeous view from every room. We wanted to run around and explore every room but we had to unload, unpack, and get settled. This is one of the hardest and my least favorite parts of travel with children, and where I turn into “no-fun mom.” Unpacking becomes much more tricky when you’re also trying to child-proof the house, and ensure that the babies don’t hurt themselves. Unfortunately, the floor was a hard tile, and given that Riaan mostly rolls on the floor, we had to be super cautious.
One way we alleviate the stress of unpacking is by setting up a Whole Foods delivery order for groceries soon after arrival, and using DoorDash as necessary. Usually one of us always has to run off to the grocery store whenever we arrive at a hotel to get food for the kids, especially Riaan who is on a specific puree diet, and that adds a whole layer of stress especially after a long day of travel. Grocery deliveries significantly alleviate this stress.
That night, after unpacking, setting up, childproofing, and ordering food, we put our exhausted kids to bed early. We tried to stick to East Coast times as much as possible for their schedule. Another trip hack, and this was a tip from another CS mom: we’d purchased an inexpensive pet/baby monitoring camera, and this allowed us to relax, eat, and roam while Riaan and Lu slept.
Good Times in the High Desert
When we discussed activities that might interest Riaan with Reina, we had emphasized that we wanted to try new experiences that could be fun for all of us, even if only for a moment. We’ve never gone out to eat at a restaurant as a family, except for once with Riaan, and he cried through most of it. We’ve never really enjoyed indoor activities at typically crowded places either, like museums, aquariums, or exhibits together, for fear he might get sick. Now there are many CS families who enjoy such activities with their children: each child is different and there are varying risk calculations for each family. We are merely sharing our point of view.
On the first full day in Santa Fe, we opted to stay in mostly, let the kids rest, enjoy the premises, and feast on the delicious green and red chili dishes New Mexico is famous for. We made a giant breakfast in the morning, and as we cooked, we watched the sunrise over the desert, while Riaan and Lu played and canoodled. Towards sunset, we ventured into downtown Santa Fe for a short trip, walking around the plaza, enjoying the sights and sounds, and trying our best to keep the kids, especially Riaan, out of the bright sun.
The next morning, we had our first official MAW activity: Meow Wolf. Meow Wolf is a weird and wonderful immersive art experience that often sees tremendous crowds. The staff at Meow Wolf opened up two hours early just for Riaan! When we arrived, the masked staff greeted us so warmly, told us how honored they were to open up for Riaan, and gave us tokens and chromodepth glasses. They said they would lurk nearby if we needed help but we essentially had the entire place to ourselves. We began our Meow Wolf journey by choosing between walking through a fridge, a fireplace, or a washer. We chose the fireplace. Lu absolutely loved it, and was running around, very excited.
Riaan was more of a cautious observer: he was intrigued but reserved smiles for lights, sounds, or rooms he really enjoyed.
Overall though we had a fantastic time, and the staff gifted us a huge bag of goodies. We are so grateful to them for allowing us to enjoy such an experience.
Dining Out
Later that day, we had another one-of-a-kind experience. Dinner at a fancy restaurant. A fellow CS mom had found this incredible restaurant for us, and it turned out to be one of the best experiences of our trip. It was fine dining in a dome, outside of a really nice hotel. The domes were outdoors, and each one had a heater, blankets, personalized music, and cool lighting.
The waitstaff were so excited to host Riaan and our family, and wore masks while they served us. David, our server, a kind soul, connected with Riaan immediately. Riaan loved David and wanted him to hold him. I was so proud of Riaan, he enjoyed the experience for about an hour and a half before he became cranky and wanted to go. But in his defense, it was 6:30 PM New Mexico time, or 8:30 pm EST, and he was tired. He didn’t eat any dinner with us (we tried, and had brought along his puree) but sat, and had a good time. We got dessert to go, headed home, fed him a late dinner, and off to bed. What an incredible day!
Soaking in the Mineral Waters
The next day we all felt an urge to release some toxins, and rejuvenate in a way only offered by New Mexico. We headed to Ten Thousand Waves, a Japanese-inspired spa, to soak in mineral hot springs. This was our second and last official MAW activity. MAW covers two activities per trip but we can obviously organize as many as we want ourselves.
I didn’t expect a chance to actually relax with children in tow but somehow we did. We had our own private outdoor tub, the air was a cool 50 degrees, high in the mountains, and we had a private shower, and sauna. We only let Riaan soak for a few minutes given the hot temperatures but he really enjoyed it. When I left, my muscles felt like spaghetti: I was so relaxed. Riaan, too, was smiling from ear to ear, and had the best nap after a big lunch (for him). I daresay this was his favorite activity.
While the kids napped, I washed the dishes and looked out the kitchen window at the trees, the sands, the desert, the cactus, and the mountains, and felt a brief moment of peace that I hadn’t experienced since Riaan’s diagnosis. I felt no need to connect with anyone or anything outside of what I was feeling in the moment. I was content to just wash the dishes, and embrace being with my children. I wanted to disappear into this ethereal world of peace.
But it wasn’t always enchanting. One night, I texted a fellow CS mom and asked if I could share real talk. She said yes. I said, “It’s great but nothing is that great when your kid is dying. How can it be?” Another night I thought that the desert was no longer as enticing or as magical as it once was to me. It no longer healed all of my wounds.
But I quickly realized that was because I had an even greater alchemist in my life: Riaan. His happiness, his brother’s happiness, is all that matters to me.
Sledding in the Sands
We were finally ready to leave Santa Fe, and depart on a three and a half hour journey to Southern New Mexico, to a town called Alamogordo, near White Sands National Park. The dunes of White Sands get their gorgeous white color from gypsum crystals. The kids were actually fine on the drive: hardly any complaints but I’m sure the lovely desert scenery helped. We drove through abandoned towns, deep into the desert, and made our way to lively Alamogordo, situated twenty miles from White Sands, and in the opposite direction, Cloudcroft, in Lincoln National Forest, where the desert scenery turns to forest, sitting at an altitude of 9,400 feet.
We visited White Sands a few times over the next two days, and enjoyed playing in the sand, walking, and sledding down the dunes. Both kids were in heaven, especially Lu. We also soared into the clouds at Cloudcroft, breathed in the intense mountain air, and had the best pizza.
On top of it all, we had a full moon. The whole scene was truly magical.
Wrapping Up
As we approached the end of the trip, we headed to Albuquerque to catch the direct flight, a redeye, back to New York City. We did enjoy a day and a half in ABQ, the land of Breaking Bad, and checked out Old Town, and some of the Breaking Bad sights (we are huge fans of the show, as well as Better Call Saul).
Another MAW coordinator, Dara, met us at the airport and stayed with us until we boarded, helping us with our luggage and to entertain the children. She was so kind and friendly, and Riaan was instantly reaching out to her for hugs.
As we departed the land of enchantment, the desert, the magic, slipping into the darkness of the night, I felt invigorated but also hit by a great sadness. Riaan had so much fun! In terms of health, he was quite well on the trip: ate, and slept well, and had a great disposition. We were happy in this cocoon of New Mexico. Could we do this again? Is such a life of exploration and joy in the cards for us?
I pray so. I truly do.
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Thank you for reading all of this, and to all those who support our work. Donate today at riaanresearch.org/support. And thank you again to the incredible team at MAW for making this trip possible for our family.