Living with a life-limiting disease

by Editorial Team

Words by Allyson Buck

As a family, we’ve always felt that travel is important to living a full, rich life. We felt that the best way to create real and lasting memories for our whole family – including our two older kids, who would have to face losing their brother earlier than they should – was to travel as much as possible as a family. We are aware that eventually travel will become difficult, if not impossible, with our son Sam, so we are determined to get in as much as we can. In his short life, Sam has been to 44 states in the US and 22 countries.

Check out those smiles! The Buck family love travelling the world together. Credit: Allyson Buck

Sam’s diagnosis of vanishing white matter disease (VWM) at 2 years of age was out of the blue. Our seemingly healthy boy had no sign anything was wrong until he fell, bumped his head and was unconscious for a matter of seconds. When we stood him up after the fall, he didn’t show any sign of pain but collapsed in a heap, unable to bear weight on his legs. A neurologist diagnosed VWM, a rare genetic brain disease for which there is no treatment or cure. There was no timeline, but we were told that over time Sam would lose his motor control and die. Our worst nightmare had come true.  

VWM causes the white matter in Sam’s brain to disappear and be replaced with water. This happens over time and with any sort of stress – a bump on the head and fever being the most common, but anesthesia, many medications or even a scare can also cause a sudden loss of white matter. Once the white matter disappears, signals can no longer get from Sam’s brain to his body. This causes a loss of motor control, though Sam will remain cognitively aware. There are fewer than 250 living cases of VWM worldwide, and most kids only survive 5 to 10 years following diagnosis.

Overnight we had run out of time. We had so many plans for things we would do with our kids in the future, but we no longer knew how long that future would be. My husband and I decided within hours of Sam’s diagnosis that we wouldn’t coddle or protect him. That we needed to let him live fully and focus on giving him the best life we possibly could, filled with as many of life’s experiences as possible, even if it meant that took him from us sooner. Life has to be lived, no matter how long we have on this Earth. In our opinion, a short life filled with experiences and memories is worth more than a long life spent without.

Sam is currently 8, weighs about 36kg, uses a wheelchair full time and is unable to bear weight on his legs, meaning he’s unable to stand or help with transfers. He has hand tremors, meaning he needs help eating and drinking, has slow speech and is incontinent. At this stage you probably think we are crazy for leaving the house at all, but with our goal to give Sam a full life and make family memories for us all, we set about travelling and fulfilling our plans, even if it’s not easy.

Since Sam’s diagnosis, the Buck family have visited a whopping 22 countries and 44 US states! Credit: Allyson Buck

We tried to travel around Europe while Sam was small, knowing that travel in Europe, Asia and South America would be difficult with a wheelchair. Last summer, when Sam was 7, we did our last trip to Europe with him, seeing Romania, Serbia and Bulgaria. It was a fantastic trip but hard with Sam as we had to carry and lift him out of his wheelchair a lot, and we knew that we would not be able to do something like that with him again. For that reason, we have focused on US travel (we live outside New York City) and our mission is to get Sam to all 50 states of America.

We have found the US to be very easy to travel with a disabled child; most tourist sites are at least partially accessible and the people are extremely helpful. In particular, we love the National Park system. All the major sites at all the National Parks are fully accessible, and there are always a few short trails and hikes we can do with Sam’s wheelchair. Each one is magnificent in its own way. We have travelled all over the world, but for natural beauty the US is hard to beat. The parks have a fantastic Junior Ranger program for kids where they complete a booklet, take a pledge to protect our natural resources and earn a badge. The kids love it and have ranger vests they pin all their badges to. In addition, the whole family gets free lifetime access to the parks when we visit with a disabled family member. With Sam we have free admission to every national park in the country. Mountains? Glacier can’t be beat. Beach? The gulf coast of Florida has the whitest sand I have ever seen. Desert? Death Valley and White Sands National Parks are incredible. Animals? You are practically tripping over the bison in Teddy Roosevelt National Park.

National parks and beyond – the Buck family enjoy getting active outdoors. Credit: Allyson Buck

Naturally, travelling with Sam’s disability is a challenge, but we’ve picked up a few tips and tricks that make it easier. 

We always rent a car when we travel – public transportation is not reliably accessible anywhere in the world, and generally not easily available in the US. We usually get a minivan or SUV to fit the wheelchair and luggage, and it makes it easier to lift Sam in and out of the car. Distances are vast in the US; on an average roadtrip we can drive thousands of kilometres, so we always spend hours in the car together, sometimes driving each other crazy but most of the time just being together. We always travel with a large vinyl, felt-backed tablecloth that we can lay out on the side of the road for diaper changes. I usually sew 2 of these tablecloths together so the vinyl side is facing out on each, which makes a very large, lightweight and inexpensive changing mat.

When we travel in the US, we don’t plan our trips. We decide what we want to do on a day-to-day basis, and we don’t book any hotels outside the first night or two. We know we are rarely more than an hour away from a decent chain hotel. We book something online mid to late afternoon and have never had any difficulty finding a place to stay (though obviously this doesn’t apply if, for instance, you want to go to New Orleans during Mardi Gras). This gives us the flexibility we need when travelling with Sam. Timing varies because often you can only see a limited area with a wheelchair, so sightseeing goes quicker. Sometimes you have to wait for an accessible tour and other times it just takes a while to get in and out of the car. We have found that not planning takes the stress out of travelling with Sam. We never have to rush, we see how we feel on the day, stop if and when we want, and find some place to crash at the end of the evening. Something that makes this possible is travelling with a blow-up pool (a square kiddie one with a padded inflatable bottom) for Sam to sleep in. This gives us the ability to stay in any hotel room because we don’t need an extra bed for him. 

We always look for accessible activities in the area. We have tried to make sure Sam can participate in as many activities as he can, and we always have a back carrier with us to go hiking and get upstairs when needed. We always loved skiing, so we still do it – Sam goes in a bi-ski. He has also water-skied and kayaked. There are many accessible programs available if you search.

Sam uses a bi-ski when the family head on a snow holiday. Credit: Allyson Buck

Travelling is difficult with Sam, so why do we do it? When you are the parent of a disabled child, it’s easy to become a little absorbed in your own life and your own problems, mostly because there isn’t a lot of time to think about much else besides what needs to be done at that moment. Travel gives us a perspective that we can’t get at home. There is nothing like being alone at the top of a mountain or driving for hours through open countryside without seeing another sign of life to give you a sense of perspective; to make you realise how fleeting and ultimately tiny your life is.

Travel absolutely brings us closer together as a family. At home we all get caught up in our day-to-day activities – everybody doing their own thing while together in the house. But when we travel we have a forced togetherness, which has made us a close unit. Then there are the memories of the experiences we’ve had: a black bear walking in front of our car in Glacier; peering into an active volcano in Hawai‘I; hiking down a canyon where the edge was too close for comfort in Canyon de Chelly; skiing down a mountain with Sam in a bi-ski; kayaking on a calm lake. These are the memories we’ll still have long after Sam is gone.

Holidays are all about the amazing memories! Follow the Buck family adventures on Facebook. Credit: Allyson Buck

Can we do everything we want when we travel? No. Do we wish Sam was healthy and our vacation options were limitless? Of course. But if Sam were healthy, we wouldn’t be out there doing it – we wouldn’t be travelling half as much as we do now. We would be doing more organised holidays that keep our kids out of our hair instead of holidays where we are together, a family of five, a unit figuring it out as we go along. We are creating so many memories as a family in the hopes that these memories will help sustain us long after Sam is gone. We hope that the bonds we have created through shared experiences will allow us to lean on each other when much more difficult times inevitably come.

To follow the Buck family’s journeys, check out their Facebook page, Sam vs. VWM.

This story first appeared in Travel Without Limits magazine. To subscribe to the magazine, click here.

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