As many of you know, Miles has a rare respiratory condition called NEHI (neuroendocrine hyperplasia of infancy). For the first 3 1/2 years of his life, Miles needed oxygen support 24/7, which was administered through a nasal cannula and oxygen canister. The everyday challenges he faced were huge, from tubing that constantly got caught under doors and around skirtings to negotiating outside spaces and learning how to be independent, when Mummy/Daddy were always less than a metre away carrying the oxygen canister. Despite these challenges, Miles has always approached life with energy and determination, his bravery during periods of significant respiratory distress has been an inspiration to all of us. 

Here are a few facts about NEHI; 

* It was first classified in 2005 so scientists and doctors only have 15 years worth of research on the condition. It is poorly understood and under researched.

*The cause remains unclear. There is some evidence to suggest there may be a genetic basis for this disorder.

*Treatment is supportive in the form of oxygen therapy; there are no drugs known to improve the condition. 

*Aside from low oxygen levels, Miles suffers respiratory distress and has a faster breathing rate. He will often have to take a break when exercising to catch his breath and as he has grown, this has become more frustrating for him when interacting with his peers.

Over the past 5 years, Miles has made huge progress with his lung health as the ratio of healthy lung tissue to NEHI infected tissue improves. When fit and well, Miles now no longer needs oxygen support, however, the NEHI is and will always be present.  From time to time, Miles suffers 'NEHI exacerbations' whereby his oxygen levels drop and he suffers respiratory distress for no obvious reason. These can last weeks, sometimes months and are challenging periods.

Miles is my motivation for running the London Marathon; I hope to raise a significant amount of money to support the medical research currently being undertaken in the US. If you are able to support and donate to this charity, I and the other NEHI families, would be most grateful to you.