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My elder son Alex and I are planning a skydive in July 2022 to raise funds for PMSF UK, for the reason that my younger son/Alex's brother Bastian (14) was born with a rare genetic disorder called Phelan-McDermid Syndrome (PMS). It's so rare that he is 1 in 2.75 million!

PMS affects every aspect of his life. He is non-verbal, has limited mental capacity, mobility difficulties including low-muscle tone, sleep problems, behavioural difficulties, and medical needs. He needs 24x7 care, and will continue to do so for the rest of his life.

Not wanting this description of Bastian's condition to define him, I will also say that he has a great sense of humour, the best smile in the world, is crazy about trains and birds, and shares a passion with me and his brother Alex in that he loves going out for drives in my various (ahem) cars, with a clear favourite in convertibles. He is able to communicate in a limited capacity through some basic signing and via an app on his iPad, which is enough for us to connect and often share a laugh together!

At this point writing this, I have to admit, I'm sitting on a commuter train struggling to hold back tears writing about Bastian. Life with him is hard, sometimes very hard, but we love him to bits and hope that he loves us too.

So anyway, a skydive. Never done anything like it. Not a big fan of flying. And just discovered I need to lose some weight! So please show us your support with a donation. Any amount is greatly appreciated! Thank you.

We'll be performing the skydive at Headcorn Aerodrome, near Ashford in Kent. Booked for 24th July, weather permitting!

Why PMSF UK? Bastian didn't get a diagnosis until he was five, and after every test under the sun we'd pretty much given up hope. He was generically classed as having "Global Developmental Delay" (the "delay" in that name is a misnomer, there is no catching up). The first pass of his blood tests missed his chromosome deletion, as it is "mosaic" (which means not every cell has the deletion). As part of a longer term study, it was finally identifed quite a few months later. The geneticist who gave us the diagnosis had never heard of it herself, with at the time only 1,000 known cases globally (now up to ~3000). The news was mixed, no cure or treatment but finally we could seek others! We discovered the US-based Phelan-McDermid Syndrome Foundation charity and flew to a global conference in Orlando that year to finally meet others affected by the condition. Not long after, the UK branch of the charity was formed, and became our extended family. There are no medical cures for PMS (yes, I know it's not a great acronym!), but when you have great people to support you, life is easier.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.