Markus Ott, father of a son with PCH2, reports on the great journey
Finally, on 27 August 2024, the time had come for us, the PCH FAMILY, to set sail from Kiel on board the AIDAnova. One week of cruising the Kattegat and Skagerrak lay ahead of us, and nobody could begin to imagine the experiences we would have together.
Everything On Board?
None of us had ever been on a trip like this with our PCH children. Many of them are dependent on heavy medical equipment, while nursing staff work in shifts; medication has to be kept refrigerated, special meals have to be prepared; wheelchairs, therapy chairs, oxygen – we need it all. A week in a hospice on land used to be the ultimate challenge for many families.
Preparation is Key
The preparation took as long as you would expect: Donations were collected for six years, our team gathered every last question and discussed it with the AIDA Special Needs Team, and an on-site meeting was arranged on board with our captain, who was immediately hooked by the project. Great cooperation with AIDA!
And there we were: 28 severely disabled PCH children, siblings, parents, caregivers, relatives, friends, medical specialists – a total of 288 people in our group.
“This is the first vacation we’ve taken together in 20 years.”
(The Zürcher family)
The Journey Begins
The first vacation together was going to be exciting! The first day at sea started with an introductory event. Many of us only knew each other through the internet or the PCH forum. Axel, 1st chairman of the PCH-Familie e.V. association, reminded us of the long path the PCH family had taken to get here. Starting as a Yahoo mailing list, at a time before this rare disease had even been diagnosed, to the development of the parents’ forum and, by today, this very real PCH2cure community of researchers and clinicians. The mood was great and everyone was excited about the coming days on board.
New Research Aims to Improve Children’s Quality of Life
The journey also set the stage for our scientific events as nine researchers and clinicians joined us on board. They took turns each day to present the status of their research into PCH, allowing us parents to join in the discussions: How could it benefit us? What direction should it take? There were open consultation hours for our children’s individual issues – patient-driven research at its best.
Plenty of Time for a Fruitful Exchange
During the days, we went on land trips to Oslo, Copenhagen and Skagen – sometimes with other families, sometimes in a larger group, sometimes just as a team. Sharing this time together really brought the whole organization closer together and showed us that we were not alone. “What about such and such?” “What are your experiences with this?” “Has this medication helped you?” “Have you ever tried that?” – After all, no one said life was easy with PCH.
It was also great to be able to talk about aids. Thanks to one mother, a representative of Special Tomato even came to the Aarhus harbour quay to show us their seat shell and baby carriage. Being able to talk plainly and share difficult questions with people who are otherwise complete strangers feels good! Our caregivers had the same experience: where else could they have talked to so many other PCH staff? This exchange was priceless! There are not even 100 people with PCH in Germany, so meeting in person is always a big challenge.
Special Moments Beyond the Disease
Those moments when the disease wasn’t the main issue were particularly special: Philipp holding his nose into the wind on the balcony and letting time stand still, when otherwise his body would have been battered by constant PCH motor disorder and restlessness. Or the times when he almost shrieked with joy as he dipped in the warm pool, realizing that everyone around him was having fun. Or when we parents spent the evening discussing soccer at the bar.
Raising Awareness for PCH
There were also opportunities to talk to other passengers who were curious about our group. We hope that the otherwise obscure situation of our children and families became more visible and comprehensible to them. FOCUS Online joined us too, filming our journey and documenting so many important but also everyday moments. You can find out more on that here.
Joy and Gratitude Remain at the End of the Journey
The following Saturday we arrived back in Kiel. Was it a great week? Oh yes, and a packed one at that! It was incredibly intense and worthwhile. Every donation, however small it may have seemed, truly paid off. Thanks a thousand times to all the donors who made this trip possible.Our cruise was quite literally a Cruise4Life and a beacon project in every respect. It was encouraging for us families, unifying for our organization, enlightening for the researchers, and, hopefully, inspiring for all those who are affected by a rare disease with severe disabilities. “Do what you can’t!” – and suddenly we can.
