This is the simple WHY!

Thanks to Covid-19 we've been double-delayed but are now booked on a trek starting April 8th 2022 - only a year late...here's hoping we raise even more in that time.

In 2016 Alexander went from Snowdon to QMC (Queens Medical Centre Hospital in a short space of time. I remember he was obsessed at the time with Point Break (the remake) and that's why he was suddenly walking mountains.

Alas when he was hospitalised with HSP and went from skinny little lad to suddenly on a drip, unable to walk, eat, drink he asked me if he could walk Snowdon again....he couldn't even get up out of his bed unaided and was sipping water through a straw after being on a drip but I said yes. We sat and talked for ages about mountains and talked about Everest Base Camp. From that moment he said he'd want to go and I was obsessed with going. Needless to say he got better, not without side effects, and every year since he has climbed Snowdon and even managed Ben Nevis in 2019.

As for Base Camp before now, life got in the way, plans fell through and then his mum got ill with cancer (now given the all clear just before Christmas after surgery and chemo) and everything went into turmoil. With hope in sight, we discussed it again and went to Evertrek with our idea and the reasons why. They agreed to help us and so here we are with three generations of our family trekking in April 2021.

There's a lot more story behind the two of us and I'll be sharing that here and blogging but for now, this face is why we are going, this little man's tenacity and awesomeness.

You may be asking "so, why am I here?" and that is a good question. Let me first start with an apology (or series of apologies). I tend to be a little too sterile when talking and I will try my best not to be but one thing you must understand is the fact I don't tend to share my real life with people. In real-life I tend to support others and give little away beneath the masks I show but, in lieu of all that is happening and has happened, I know I need to challenge myself

This journey is just that - a massive challenge not only for me but also for my family.

Both my sons and myself have been confirmed as having a micro-deletion of a teeny-tiny bit of a little-known chromosome known as CACNA1C located on the 12p13.33 area. Yes for a lot of people, ourselves included initially, that will mean absolutely nothing and while the deletion is minuscule we are learning what likely impact it has on us. We have since been involved with pioneering research to help understand the impacts of the deletion so that other families can better understand what is happening to their loved ones.

The original plan was to hit the slopes of Everest and the Himalayas in April 2021, but Covid put a stop to that. Since then my oldest son is now thirteen as of December 2021 and we are once again planning to climbe to Everest Base Camp in April 2022, all being well. We have been training through the lockdowns and while my once little boy is now much bigger (he looms almost adult), there's still no taking away the fact at thirteen he really is doing something incredible for causes close to his heart.

I am acutely aware that there are other families far more affected by the rare genetic deletions, duplications and/or mutations but I need to remember that does not make our journey any less important. We are, all of us in the realms of rare Chromosome Disorders, Unique in our own ways and no single journey can be seen as anything other than a journey into the unknown.

Because of the history (and this is the short version, to find out more you can visit the on-going blog at https://tobeyalexander.wixsite.com/rarebutnotalone) we are raisng money to split between TWO charities, those being:

Unique Rare Chromosome Disorder and Nottingham Breast Cancer Research (part of the University of Nottingham).