Little Iain has endured so much in his short life, more than most adults will have in their lifetime and certainly not the start to his life that we as his parents would have chosen. He is three years old and he is a warrior!

Iain has Kabuki syndrome a rare genetic disorder that effects one in every 32,000 children around the world. It effects every child in different ways but for Iain the most worrying issue that he has is a broken heart. Iain had his 14th surgery on the 6th June a heart surgery to place a band on his pulmonary artery which controls the flow through the holes in his heart and ensures his lungs get the right amount of blood. This band allows us and the amazing medical team that treat him more time. Iain's heart is so complex in it's shape and function that in it's current condition presents his team with unanswerable questions. With each day that passes we as his parents hope that a medical solution can be found but we are also realistic and need to be prepared for any eventuality no matter where in the world that may be we also need to be able to provide him with all the equipment and adaptions that he needs. Iain is still unable to walk despite his best efforts so far. He is not able to swallow so is tube fed and still requires oxygen overnight. Due to Iains already complex health needs he will not be eligible for a heart transplant so we have to hope that as medical science progresses a solution is found.

Our amazing friends Steven and Vicky Ledgerwood and Les and Sarah Spiteri have decided they want to help us fundraise for Iain and are planning to throw themselves out an airplane skydiving on 18 August near St Andrews. They have asked us to set up this page for donations. They have covered all the costs of the skydive so every penny donated will go to wee iains fund.

Thank you all from the bottom of our hearts.

The Norries
xxx