Having Phenylketonuria (PKU) can be hard - just ask Joshua, my 7 year old son. PKU is a metabolic condition that is managed by a strict low-protein diet and monitoring of blood Phe levels. The focus is often on what Josh can't have: meat; seafood; milk; eggs; nuts; regular flour, pasta, bread; the list goes on. So, to remind us all that PKU is not just about restrictions, we have challenged ourselves to seek out positive opportunities and experiences relating to PKU.
Thanks to a travel grant offered by ASIEM and Nutricia, one such opportunity - attending an international conference about PKU - is now ours.
The two day ESPKU conference in Antalya, Turkey, where we hope to meet other PKU families seeking similar opportunities, is where our journey begins. At the conclusion of the conference, Josh and I will set off to learn about Turkey, its people, its history, its landscape, and what it might mean to live with PKU here.
Negotiating the west coast of Turkey, from South to North, we hope to: encounter the mysterious flames of Chimera and ancient ruins along the Lycian Trail of Olympos; enjoy the Mediterranean beauty of the coast in Fethiye; bathe in the calcium-rich thermal pools at the white cliffs of Pamukkale; take in the ancient city of Ephesus and traditional Turkish culture in Selcuk; to arrive in the bustling city of Istanbul a week later. All while maintaining a little-heard-about diet, sourcing suitable foods, carting around kilos of medical supplement and overcoming language and cultural barriers. Challenges and opportunities abound!
Our reward at the finish line? Knowing firsthand that PKU, like many challenges, has opportunities to offer. If you reach out and grab them - they can turn into life-changing experiences.
Knowledge that I hope might give Josh something positive to focus on when he feels down about having PKU. Now, and for the rest of his life.
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Why a Seagull?
- Remona
- In the story of Jonathan Livingston Seagull, we are shown that many of Jonathan's problems were due to his focus on his limitations. He also suffered from the liability of attempting to appease everyone. However, although distraught at times, Jonathan never totally gave up. He kept trying. During one instruction lesson on flying, an elder advised Jonathon: "To fly as fast as thought, to anywhere that is," he said, "you must begin by knowing that you have already arrived." Self-actualisation is a constant theme throughout the book, as well as the messages of courage, determination, perseverance, overcoming limitations/barriers, practice, and fortitude. These are virtues that make a lot of sense to our family. In this blog we hope to share some of the wonderful experiences PKU has brought to us in our own travels - acknowledging the bright side of the perceived limitation that our son will carry for life. We challenge him, and others with PKU to not just endure it, but LIVE it.