An epic journey to Mount Everest Base Camp
For Gavin Skevington, his father and eldest son Alexander, 2021 will be like no other as they plan to trek to the Base Camp of Mount Everest to raise money for NBCRC and one other charity close to their hearts.
"Alexander, and myself for that matter, found out we are carriers of a rare genetic deletion that has unknown effects on our bodies. In Alexander it appears to have affected his muscles a little and he has been subjected to numerous tests in the last few years. It appears we fall under the umbrella of Timothy Syndrome by nature of the deletion but we are on the “lucky” end of the scale having minimal significant effects.
"In 2015 Alexander, then aged seven, asked me if he could climb a mountain having watched the remake of Point Break (sorry for die-hard fans of the original, which is good, but we have a soft spot for the remake). Anyway, at the start of 2016 I drove him to the Peak District and he climbed Mam Tor. Needless to say he got the bug and in 2016 he climbed Snowdon for the first time in the August of that year.
"In September disaster struck, one day I got a call while at work (aside pretending to be an author I am a serving Police Firearms Instructor and Operational Officer) and my wife told me he had a rash that wouldn’t disappear. Fearing the worst we rushed him to A&E and by the time we got there he couldn’t walk and I had to carry him through the doors. We were treated as if he had meningitis and he was given an enormous needle on slow pump (I told him it was Super Soldier serum like Captain America) but we were in bits.
Henoch-Scholein Purpura
"A few hours later it was confirmed it wasn’t meningitis but something called Henoch-Scholein Purpura (HSP) and in the next few hours his body went haywire. From being our skinny little athletic mountain-climbing boy he swelled up to the point he could hardly eat, drink, walk or talk. He was in and out of hospital, on a drip and subject to a million tests, for the next few weeks until the symptoms subsided.
"I remember sitting by his bed holding it together when he said “daddy, can I walk up Snowdon again?” That was the first time I let him see him cry about him being ill, looking at him laid in bed sipping water like it was fire, he could barely walk downstairs, how could I promise him that?
"After HSP he needed constant monitoring for lasting kidney damage but pushed through that part unharmed. As a result of this he developed a pain in his legs which we got investigated. That led to the discovery of the genetic deletion with that being of unknown significance, we are still working on that part. With that we found out about other families more affected by the deletion and have become involved with pioneering research through Cardiff University to understand the effects of the deletion. As we see it, by having the deletion with minimal impact allows us to be the perfect guinea pigs.
Back to the mountains
"Now, back to the mountains! The following year Alexander conquered Snowdon again and has done every year since as an annual “up yours” to his ailments and suffering of HSP. In 2017 he conquered Snowdon with his younger brother and both of them sumitted Ben Nevis (10 and eight at the time) in August 2019.
"Every year we try and get a number of low peaks in with regular hikes up Mam Tor, Kinder Scout, local hills and Snowdon as I say, as an annual trip. All that after falling ill with HSP and suffering the effects of that, discovering the deletion, having unknown reasons for pains in his legs he has maintained a desire to reach for the sky (even the Scotland family holiday was centred around him doing Ben Nevis).
"Consider the fact his mum at the time of Ben Nevis was having chemotherapy for breast cancer and the fact he has pushed and persevered through all of this shows what a strong, proud, amazing young man he really is. But what next? Well, I may have purposefully omitted this part, but while he was recovering from HSP he also watched Everest.
"Needless to say, a child’s mind asks “how much bigger is Everest” and you try explaining in terms of “really a lot bigger dude!” But it set something tickling in my mind that has grown and grown into something we want to do. In 2021, stealing him away for the whole of the Easter holiday from Comprehensive School, I intend on taking him and my dad to Everest Base Camp, not only as the trek of a lifetime for a then 12-year-old, but also to raise awareness and money for the charities that have been there for us around the genetics. As I’ve said I’m a cop and have been squirreling away money to pay for Alexander and myself and we are pretty much there with the funds for the trip.
Why NBCRC?
"As for why Nottingham Breast Cancer Research as our other charity, well that comes down to the fact Alexander's mum was diagnosed with breast cancer at 35 in 2019. More than a shock to the whole family she took part in clinical trials as part of her treatment routine and was treated at Nottingham City Hospital which, as you know, becomes a second home for us during the treatment phase.
"Alexander was a trooper throughout and more than helped with the day-to-day stuff, supporting his mum and helping me then play mum and dad to him and his two siblings while still carrying on at work full-time having taken on a whole new job just before Sarah got diagnosed.
"Knowing what his mum went through and how much he owes for helping fix his mum, Alexander suggested we let his mum choose a second charity to raise money for because now it was not only a survival moment for him but for his mum too. Sarah did not hesitate in suggesting Nottingham because we are born and bred here and she knows the work they do has ultimately helped her still be here.
"Needless to say the whole journey from all aspects has been one that is fit for some X-Factor sob story but it just shows what an amazing little human being Alexander really is.
Getting stuck into training
"Now for training, well knowing the weakness has always been in his legs, I've researched a lot of different ways to train. Aside from walking which we are doing regularly and even managed over a hundred miles of local walking during lockdown when we had to shield at home, he's doing regular circuit training, running, functional training and the likes.
"As he is still young it's important to embed training to not only be a foundation block for a healthy lifestyle but also make it fun. During lockdown I researched numerous different circuit routines and we started with the old-school P90X stuff every few days but have recently enrolled in Chris Hemsworth's Centr training (not cheap but well worth it) which has reinvigorated him and he's really engaged wiht that to the point he has been doing five circuits a week with two days off during the summer holidays.
"He's becoming fitter, stronger and knows his body well enough now to know the limitations and residual effects of the Timothy Syndrome and all the unknowns associated with it."
The Skevingtons will be trekking between April 2-18 next year. If you have been inspired you can sponsor him - or contact us for advice on carrying out your own fundraising activties for NBCRC.