Thanks for taking the time to visit my JustGiving page.

I’m raising money for a small charity very close to my heart, running the ‘Birmingham Black Country’ Half Marathon from Wolverhampton to Birmingham on Saturday 1st July - and I’ll be aiming for a PB.

On 3rd November 2018, we welcomed our wonderful, beautiful, funny, kind, and sometimes infuriating son Benjamin to the world. We also started a journey that led us to learning about Poland Syndrome.

Shortly after he was born, it became apparent that something wasn’t quite right. Benjamin didn’t look symmetrical in his chest area, and one of his hands looked to me to be smaller and somewhat conjoined. Most worryingly, no one seemed to know what or why this was.

A few weeks later, thanks to the amazing Birmingham Children’s Hospital, we had an answer. Benjamin has Poland Syndrome, a very rare birth difference. The most common symptom is a missing or underdeveloped chest muscle, followed by missing or, as in Benjamin’s case, underdeveloped digits on one hand.

Poland Syndrome is so rare that very little is known about it, including what causes it. Very little is known even within the medical community about it - we were very fortunate to be referred and be local to probably the best resourced hospital for it in the UK. In many cases, diagnosis does not happen until later in life because of the lack of understanding and knowledge. PIP-UK aims to change this and make sure people get access to the right information for them, at the right time.

As a family, we are still at the start of a lifetime of learning about Poland Syndrome. So far it has involved 2 surgeries on Ben’s hand, and though we hope that will be the extent of it there are a lot of unknowns ahead due to how rare the condition is. Being part of the PIP-UK community will give us the best support and advice network we could hope for, and we’d love to give something back.

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