Having a family member with MPS, Fabry or a related condition can make the thought of going on a holiday a daunting prospect. As an MPS II dad of Oliver (23) and Sam (21), I have always been determined to give my boys as many experiences that most people take for granted. With holidays being one of them, I am here to tell you that it is possible to do with a few simple preparations put in place.
It's all about the planning!
When we considered going on our first holiday since the pandemic, we initially had to look at how the boys and their MPS had changed. Oliver’s airway had deteriorated, which meant that it was no longer advisable to fly. Furthermore, the medical equipment we needed to take with us limited our holiday options.
The easiest part was agreeing that we all wanted a holiday in a much warmer climate which is also beneficial for respiratory issues. So, where could we go and how would we achieve it? The moment called for another one of Bob’s Excel Spreadsheets.
First on the list was medical equipment. Olly needs a C-PAP machine, a medical grade air purifier and a nebuliser machine, all of which are large items. This ruled out going by train and left us with two options, to either take the car or go on a cruise. After much debate, we decided on Barcelona as our destination and to travel by car. With our extended family in tow, Sam was able to travel by plane with his grandparents, aunty and cousins and it was only my wife Claire, Oliver and myself needing to go by car.
Next, I needed to check on the local hospitals in Barcelona and whether they had any MPS experience. I reached out to my great friend Jordi Cruz at the Spanish MPS Society, he was very helpful on the details and provided me with some emergency contacts.
With this piece of the puzzle in place, I could focus on accommodation. We have always found it far less stressful to hire a villa as it is actually surprisingly cost-effective and means we have more rooms, more toilets and we can follow our owns schedules.
After further research, I booked a villa right for us, sorted out the insurance, arranged the channel tunnel tickets and downloaded Waze to guide us alongside my car satnav (just in case one failed). Once I had copied all medical notes onto a USB device to function as a digital health passport and ordered new GHIC medical cards, we thought we were ready to go in good time but then… !
Sam needed an MRI scan for what we assumed was sciatica which meant that until we had received the results, the insurance company would not cover him for any MPS related issues. Knowing we would not hear back before the holiday, we decided to take out basic insurance that covered for accidents etc. and rely on the GHIC scheme for any other eventuality. I sometimes think we are used to taking calculated risks as living with MPS can present new challenges every day.
Eventually, all planning was done and together with a packed holiday file and a car filled with everything we could possibly need, we were ready to go.
Barcelona is a mere 1,550km from our house which would take us around seventeen hours door to door. This was a bit daunting, but we were absolutely determined to do it!
We set off at 7pm on a Friday evening, caught Le Shuttle and after sharing the drive with Claire, we eventually arrived in Barcelona 24 hours later. We were tired but extremely happy that we had made it!
It was just fabulous to be on holiday with the whole family again! As expected, we had to deal with various MPS issues, but thanks to our planning, we were able to manage. We all enjoyed the sunshine and being able to have long and lazy evenings outside around the dining table, sharing many laughs.
What did we learn?
Above all, plan!
Break up long-distance journeys and schedule an overnight stay
Consult with your clinical team and ask whether you should fly
Think about what medical equipment you need to take
Insurance is the most difficult problem to solve, so make sure that you are not awaiting test results if possible. I would recommend getting a ‘Fit to travel’ letter from your GP which is usually easier than asking the hospital.
Take all medical records with you, ideally on a USB device. Your clinical team can help with this if you give them enough notice.
Pick your location carefully for peace of mind. We always ensure that we are within 30 minutes of a hospital and if possible, one that has some MPS experience.
All of this may seem daunting at first but remember, you are having a holiday! Enjoy yourself and make memories, as especially when living with MPS, Fabry or any of the related conditions, it is so important to relax and laugh together.
For 2024, we are already planning a cruise from Southampton. It will be interesting to learn how it will work for us in comparison to this year’s adventure.
Finally, remember that a Rare Life is just a different life with some additional twists along the journey. All of you are resilient, have amazing strength and determination. We are not defined by our disease and by sharing our stories, we help one another to have a Rare Life lived better.
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