Look After Lorcán

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Lorcán on a swing

This is Lorcán. Lorcán has cystic fibrosis (CF) Lorcán is two years old. Lorcán has been fighting a potentially life shortening lung infection for the last six months and treatment isn’t working.

There is an amazing drug called Orkambi made by Vertex that is not funded on the NHS, this drug could help Lorcán and thousands of others. Over 240 people in the U.K. have died waiting for it to become available. Vertex and the U.K. government are letting people with CF die because of a disagreement over cost.

Parents have had to find an alternative way of getting these drugs for their children and the Cystic Fibrosis Buyers Club have found a generic copy of the drug that individuals can legally import, it is a fifth of the cost. This is however still beyond what we can pay.

I’ve previously shared (one, two) content about my friend Jen‘s two-year-old son Lorcán, who suffers from cystic fibrosis, as well as joining in the #strawfiechallenge earlier this year. A particular aim of Jen has been to get access to a drug that could add decades to her son’s life, but which isn’t being made available on the NHS. Running out of options to get access to medicine that could dramatically improve her kid’s quality of life and prognosis, she’s now set up a GoFundMe and is soliciting donations.

If you can help, even just a little, please do.

To The North Pole!

In April, my dad’s off to the North Pole, in another of his crazy expeditions! Long-term readers might remember that he and I cycled around Malawi and attempted to canoe down the Caledonian Canal, but his latest adventure makes those two look like a walk in the park!

It’s particularly challenging, I think, because he’s having to walk there. It turns out that there isn’t a regular bus service to the North Pole, which I think pretty-well represents everything that’s wrong with the bus industry these days. I worry about the poor old lady who lives at the North Pole – you know, Santa’s wife – and how she gets out and about when her husband is out in their only flying sleigh.

My dad, dragging a tyre along the edge of the river in Gateshead.

But in any case, dragging a sled behind yourself which holds everything that you need to survive for over a fortnight on the Arctic ice is a monumental challenge for anybody. As part of his training, my dad’s been dragging a tyre, roped to his waist, around Gateshead. This apparently approximates the amount of drag that is produced by a fully-laden sled, although I’m not sure that the experience is truly authentic as polar bears are significantly less-likely than geordies to mock you for dragging a tyre around. Also less likely to maul you.

In fact, now I think about it, the dangers of Arctic exploration – with its shifting ice, temperatures below -30°C, polar bears, and blizzards – are actually quite tame by comparison to going for a stroll in some parts of Tyneside.

In any case, I’m incredibly proud of what he’s doing. His expedition is self-funded, but he’s also accepting sponsorship to raise money for an organisation called TransAid, who help provide sustainable and safe transport solutions in the developing world, where they can make all the difference to people who otherwise wouldn’t be able to reach a hospital, school, or work opportunities.

So if you’re as impressed as I am with this venture, then please find a little spare change to sponsor this worthy cause: sponsor Peter Huntley’s  North Pole trek in aid of TransAid.