Life changing mountain expedition promotes awareness of Childhood Cancer and essential research funding…

Last night I spoke on the ‘phone with our good friend Albert Luescher , fresh from his successful expedition to climb Germany’s highest peak in aid of Ben Pavitt’s Legacy of Love Fund, a special named fund of the CCLG: The Children & Young People’s Cancer Association - CCLG, which is raising funds for research into all forms of childhood cancer. With this September being Childhood Cancer Awareness Month (#ccam), Al has asked me to share his part of the story, but from Ben’s perspective, recognising that in the end this expedition was not really about a man against a mountain and the elements, but instead about us all following Ben’s inspirational example, and hopefully spreading a little of that inspiration to help children and families affected by this terrible disease.

What struck me most in hearing some of the gory (and largely unpublishable!) details about the expedition, was just how similar the climbers’ experience was - albeit on a much narrower scale - to that which is undergone by children like Ben following their diagnosis. Al is many things, but until he was inspired by the example of Ben’s courage, a climber was not one of them. Having thrown himself into the idea of climbing this enormous peak, he had to learn fast, and many of his lessons came the hard way. He does not want me to make this post about him, but suffice to say there were times when this climb - assaulted as it was by a freak burst of wintry weather in late summer - turned into a fight for survival, a battle against nature and the odds, and one which could all too easily have ended with Al not making it off the mountain. Fortunately, he lived to tell the tale!

Like a novice mountaineer, children receiving treatment for cancer do not truly know what awaits them up the mountain they must climb. The mountain itself looks incredibly daunting from afar but as it draws closer it only grows more and more imposing. Every step of every day presents a fresh challenge, as the very ground underfoot and the unpredictable weather work their treachery upon the traveller. Some children of course, like Ben, never make it off their mountain, whilst others are so altered and /or damaged by the experience that they are never quite able to return to their old lives - or live the lives they had hoped for - despite surviving the rigours of the climb.

Al places great store by Ben’s beads of courage, a picture of which he has kindly shared in his own social media posts, and he equates his climb, quite possibly the first of many over the coming years, to his now being worthy of being awarded perhaps two of Ben’s beads. One equates to the start of Ben’s journey, whilst the unexpected conditions Al faced as he approached his climb, making it by far the worst his experienced guide had faced on the mountain, perhaps merit another for surviving a near death experience as Ben did over a course of several days in paediatric ICU in 2020 and every time he had an adverse reaction to his treatments. Ben’s journey involved many hundreds of these experiences.

We are very keen to keep retelling the story of Ben’s great courage in the face of the ultimate adversity, knowing that for so long as we all remember this Ben will never truly be gone, but this is as much about making everyone aware that Ben’s case was by no means unique. Too many children, too many families, are facing these challenges today, and their guides - the oncologists, the specialist nurses, the transplant teams and so many others - need to be much better resourced if they are to lead their charges safely off the mountain. Unlike Al, who, despite being our highest individual fundraiser to date of course made a conscious decision to embark upon this expedition and could have turned around at many points in his journey (although of course he chose not to), these children and their families have no choice. The mountain is coming for them whether they like it or not, and all we can do to help is make sure we assist their guides to mark their way, and give them the very best information, forecasts and equipment we can with which they might best the odds and leave no more climbers by the side of the trail.

If, like Al, you are inspired by the story of Ben and others like him, and even if you have donated before, please consider boosting Al’s fundraising for childhood cancer research by clicking this link to his justgiving page and/or sharing this post wherever you possibly can.

https://www.justgiving.com/campaign/ben-pavitts-legacy-of-love-fund

Within this page and through links on Facebook to our "C through September" challenges (the money from which will filter into Ben’s Fund in due course) you can read about and support one of many challenges being undertaken by so many wonderful supporters, like Al.

Many thanks.

Mike

Notes for Editors:

For further information about Ben Pavitt's Legacy of Love Fund, please see his web page with CCLG here: https://specialnamedfunds.cclg.org.uk/ben-pavitts-legacy-of-love-fund/

At the time of writing, total charitable fundraising in Ben's name for all charities during Ben's lifetime and following his death (between Friends of PICU, Southampton Hospitals Charity (Piam Brown Ward), Teenage Cancer Trust and CCLG (including Gift Aid) stood at:

Friends of PICU (Ben's own JustGiving campaign) Aug 2020 onwards: ￡5,367

SHC Piam Brown (via Paris Smith) Apr 2021 - Mar 2022: ￡6,439.38

Teenage Cancer Trust (members of Pavitt family) Oct 2021 onwards: ￡19,198

Ben's Special Named Fund with CCLG (933 supporters, including ￡2,113.60 raised April 2022 onwards by Paris Smith LLP ) ￡43,716.55 + Gift Aid of ￡6,852.65 = ￡50,569.20

Facebook-based "C Through September" Challenges running totals (Mike Pavitt and 2 Friends) = ￡765

GRAND TOTAL CHARITABLE FUNDRAISING IN BEN PAVITT'S NAME (12 Sept 2022): ￡82,338.58

Our aim is to grow Ben's Special Named Fund to ￡100,000 by 11 Oct 2023, which will be the second anniversary of this death. If we attain that target, total fundraising across all charities by that time will have grown to more than ￡130,000.