Team Lenkiewicz is getting ready for its next coastal challenge! We are planning a surf, SUP and cycle mission around Devon and Cornwall this bank holiday weekend to celebrate Osian's third birthday and to raise money and awareness for a very special cause! 

This year we are fundraising for the Kabuki UK charity: https://www.kabukiuk.org.uk Osian was diagnosed with Kabuki Syndrome as a baby, and since then we have found the research, awareness-raising and community building carried out by this charity hugely helpful. The charity brings children with Kabuki and their families together in annual family days, funding travel and accommodation to events where needed, and provides much needed grants for equipment too. They are an important support for parents of newly diagnosed babies and children with Kabuki, offering hope, information and community. Here is a short film about the Kabuki UK family days: https://www.youtube.com/watch?v=Tf-2bCiX3mg  

Kabuki is a very rare genetic condition that affects people in different ways. In Osian’s case the impact so far has been massive. In his three years he has experienced a life saving operation to help him breathe, was fed by a tube for three months, had surgery to repair a cleft palate, and spent four months in a full-body plaster cast following hip and leg surgery. Today we are learning more about the ways Kabuki can affect development and behaviour, speech and communication, sensory processing and learning. We cannot believe how determined and resilient our little warrior has been through all of this. He never fails to surprise and inspire us. Since the first lockdown alone Osian has already learned to stand up, take his first steps, and venture outside. We are so very proud to be Osian's parents and it brings us so much joy to see him thrive and shine as he is today. 

As Osian turns three we are sharing with others about Kabuki Syndrome, so that all of his friends, family and community can know more about its impact and continue to cheer our little superstar on in all of his amazing achievements! We hope that you will join us in celebrating Osian’s third birthday by donating to our cause, or just by cheering us on virtually or in person! We would love to see you in the water :)