Home and away

Part Three.

After falling sick in Thailand, newly diagnosed Braca, four, returns to New Zealand with his parents and younger sister to the care of Starship Hospital, in Auckland, where they learn how to care for a T1D child. Armed with new skills, they return to their beloved yacht Atea and set sail – insulin in fridge – for Sumatra, Cocos Keeling, Chagos and the Maldives. By Kia Koropp.

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As our cruising companions raised their sails and caught the wind westward across the Indian Ocean, we folded our wings and flew south. It is impossible to speak highly enough of the Starship, New Zealand’s primary children’s hospital, and its paediatric diabetes department. The team had been briefed about our case and were ready for us when we got there. The day following our arrival in Auckland, we were readmitted into hospital for observation and training.

Our first session with the senior consultant was a turning point in our attitude towards living with a child with diabetes. While we were still reeling from the knowledge that diabetes was a fullcare incurable disease that might curtail our sailing dreams, the Starship diabetes team was used to supporting T1D families living in rural townships or remote Pacific Island communities. Our case as a cruising family was unique, but others had experienced similar obstacles and, from the outset, the team expected we would want to return to the boat and a life afloat.

From day one, the conversations were optimistic and encouraging – our training program would be concentrated and accelerated, and we would be issued a supply of insulin to last us a year.

The resounding message was: “Diabetes should fit into your life, not rule over it.” With the team’s unwavering support, we began to let our dreams back out of the box. But first we had to confront our level of confidence and ask some hard questions: Could we return to a life on board the boat? How capable were we to care for our son completely removed from medical support?

We needed a trial run to answer these questions. A month after arriving in New Zealand, we booked ourselves on a three-week campervan tour of the South Island. We drove the length of the island and enjoyed being tourists in our own spectacularly beautiful country. It was therapeutic for our over-stressed souls and bonding for a family who had been split up for much of the preceding ordeal. Finally, we were finally cut loose to laugh, play and bond as one unit again.

After an amazing South Island tour, we had showed ourselves capable of supporting Braca away from our medical team. Now it was time to get down to logistics. Who could we talk to in the cruising community who could advise us on life onboard a boat with diabetes? All of the cruising T1Ds we were introduced to were adults who had been managing their condition for years. However, children with diabetes are different as they have smaller and less stable metabolisms. Our main question was: “How far away from expert care should a newly diagnosed four-year old T1D child travel?”

There were also practical considerations. We needed a reliable refrigerator that could hold a year’s supply of insulin onboard. A replacement fridge was ordered. We needed to guarantee communication with our diabetes team should any issues arise, so we upgraded our unreliable SSB radio to a satellite link. Our allstar diabetes team and friendly local pharmacist gave us a two year supply of insulin, glucose monitors, testing strips, injection pens, ketone strips, emergency glucagon kits and an assortment of other diabetes paraphernalia. In a whirlwind of planning and purchasing, we readied ourselves and spread our wings. We would have to find a new route for the season, but these four seabirds were heading back out to sea. We were too late to follow our initial Indian Ocean itinerary and an attempt to re-join the 2016 fleet would mean a long ocean passage and missing out on some of the highlight destinations completely. Another season in Malaysia and Thailand did not appeal to us. Given we would be travelling out of the main cruising season, where should we go? Sumatra and the Maldives popped up on our radar. In June, four months after diagnosis, we began our 2016 cruising season. The following six months sailing was one of our most stunning experiences to date and an example of what can happen when the best laid plans fall through. Sumatra, Cocos Keeling, Chagos and the Maldives all proved to be top class cruising grounds and being there was a testament to what is achievable against the odds.

June 2018 marked our 24-month milestone of cruising with a diabetic child. We started with small steps through those dark days when our future seemed bleak. Buoyed by an encouraging family and supportive medical team, our plans were based on risk management and the mitigation of any foreseeable complication. Finally, we trusted ourselves to let go of uncertainty and released our shore-bound tether. Two years ago, we headed Atea’s bow towards the open sea and found peace and simplicity in the wide embrace of the ocean. Through the experience we learned what the doctor said was indeed true: “Diabetes should fit into your life, not rule over it – however you choose to live it.”

John Daubeny with Kia Koropp, Ayla and Braca (right)

John Daubeny with Kia Koropp, Ayla and Braca (right)

Kia shared her story in the Summer 2018 issue of Diabetes magazine.

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Jo Chapman