How We Planned Our PKU Wedding

It’s said that an average of one in ten thousand babies are born with the rare genetic condition, phenylketonuria (PKU). That’s the equivalent of just nine people in a full capacity Wembley crowd. Yet, despite extreme rarity, and against huge odds, my newly wedded wife, Nichola, and I - both diagnosed at birth - recently celebrated an ‘all PKU’ marriage. Now, with our big day existing only in our memories, these are our tips for organising a PKU wedding:

Finding A Venue 

The first challenge we were faced with, while seeking our venue, didn’t have so much to do with the challenges PKU brings forth, but more so the geographical location. It was of the utmost importance to have our nearest and dearest celebrate with us, and so we only considered venues of equal distance for both families. In hindsight, the first place we turned our attention towards was probably verging on ‘bizarre’. It was an outdoors glamping site with bell tents and teepees to celebrate and sleep in, which we had inquired about booking the entire place. Just imagine the invites: “We’re getting married, bring your wellies!” The search continued, though (thankfully). Nichola had been scouring the internet in pursuit of the perfect place, when she stumbled across The Lynnhurst Hotel in Johnstone, just outside of Glasgow.

The Lynnhurst was the perfect distance for both families. It REALLY looked ‘the business’ on their website, had many extras included in their wedding package (which could be altered to our preferences), and bang on our budget!No time was wasted in paying the deposit after an excitable first impression and positive discussion with the hotel’s wedding coordinator (including details of dietary requirements). That was it! We were getting married! 

Catering

Remember, PKU is genetic! So it might not come as much of a surprise that Nichola and I both have siblings who live with the condition, plus we’ve been fortunate enough to have met some brilliant friends in the PKU community too. Therefore, we needed to ensure everyone had suitable meal options throughout the entire day. Venue coordinators were very accommodating, but things became a whole lot easier when Vitafriend’s Chef Neil contacted us about our plans and offered his PKU catering expertise. Neil was heavily involved in the build up, asking all the questions necessary to ensure those with PKU could eat freely without feeling ‘different’.

The venue served lentil soup, followed by a chicken dish for the main reception meal. Chef Neil served butternut squash and sweet potato soup, followed by a vegetable wellington (with root mash), and sticky toffee pudding and custard for PKU guests. He even considered the colour of the soup - matching it to that of the soup enjoyed by non-PKU guests. The wellington, served as an excellent meat alternative, had a lovely herby flavour.Fish and chips cones were the theme of the evening buffet, so Neil prepared and set out a whole buffet of options with banana blossom fish cones (with sweet potato fries) in response to the venue’s own excellent effort. There were PKU friendly canapes after the ceremony, and our PKU wedding cake (by Eleanor) was unbelievable! We will always be forever grateful for your contribution to our big day, Neil (if you’re reading). Thank you!

Explaining The Condition

Upon visiting the venue for the first time, we had a guided tour and discussed things with the coordinator over a coffee. Both Nichola and I have enough years behind us to know that it’s essential to explain PKU as the worst case scenario, because people can too happily brush it off as something similar to a gluten intolerance. There was no way we were going to let that happen, so we highlighted that mistreated PKU can cause brain damage/cognitive impairment, told them what foods were a danger to us, and there would be numerous people also attending with the same dietary needs (for exactly these reasons). We needed acceptance, an openness for flexibility, a willingness to work with us (and we hadn’t yet paid our deposit). We needed them onside! There was no resistance, objections, or concerns from the coordinator, and the venue was stunning! The moment that appeared to be the case, and everything lined up, we were happy to throw our wallets and purses at them (and ended up extremely happy we did). The venue also had no issues in granting Chef Neil kitchen access to cook for PKU guests when those plans came about either. Maybe they could have been better at communicating with Neil at times, but they certainly didn’t object in any way - and Neil said afterwards he had thoroughly enjoyed working alongside their chefs on the big day. 

Managing Exchanges

Counting exchanges on the day of the wedding was so, so easy. Everything was exchange free! Had we consumed anything extra then that would have to be counted, but, otherwise, it wasn’t necessary as the meals, snacks and treats were all catered for with PKU in mind. We obviously have Neil to thank for much of this, plus Nichola was on fire with organising and preparations throughout the entire build up. Two superstars! Further agreements were made with venue staff for ONLY PKU wedding cake to be put into the honeymoon suite (to avoid PKU mishaps). No regular goodies. We provided extras.

So, finding a venue that feels exciting, in a location that suits as many as possible, and with staff who show absolutely no signs of doubt/inconsistency when learning about PKU requirements, were the building blocks to securing the perfect place for our special day. The venue needed to be open to provide suitable alternatives for PKU guests, or allow someone to come in and use their facilities - like Neil did for us. Explaining PKU in a direct/serious manner can be critical in getting a venue to cooperate, as a milder approach could see it brushed aside. With excellent planning, managing exchanges on the day can be almost effortless.