Does this make sense? Hollywood producer campaigns to find cure for daughters’ rare disease

Please forgive me for, for once, not dedicating a blog post to Corporate Responsibility, consulting, coaching, or leadership training – but instead to a topic that has affected me personally.

In order to read on, you will first have to click this link to get the story (and perhaps also watch the video there).

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This is a very tricky ethical dilemma – a matter of ‘triage’? Should medical research money only be spent if it can save the greatest number of lives? Formally unethical, but practically unavoidable?

Nobody who has not gone through it themselves can fully understand these parents’ agony and pain. I have, and I feel with them 100% (18 years later, I can speak and write about it).

These parents, the Grays in Hollywood, are in a privileged position – they may actually succeed in raising the millions they want through their celebrity friends and those friends’ social media power (crowdfunding – “just give $1 each”).

However, even with raising millions ‘yesterday’, there is no guarantee a cure will be found (another ‘Lorenzo’s Oil’ case would be quite a miracle) – and even less of a chance that it will be found in time to still save these girls’ lives.

But I understand – I also fought until the last day, calling experts around the world, at Johns Hopkins, etc. As a parent, eventually giving up all wishful thinking and really accepting reality – accepting that there is nothing you can do other than letting your child die – is incredibly hard, letting go is hard, in your mind rationally wanting to agree to the doctors turning off the life support, but emotionally just not managing is hard, finally watching your child die is hard, and you have to find a meaningful way to say goodbye that you can remember forever (how many parents of children dying of cancer had to go through it?).

With this Batten disease, they say that children die between the ages of 6 and 12. With a lot of similar very rare illnesses that also start with first blindness, then seizures, then loss of motor skills, children already die during the first 12 months of their lives (as in the case of my son, Mathieu). There are countless of these very rare diseases … we are not even aware of that. But then always just extremely few children are affected, e.g. 1 in 1,000,000 or 1 in 10,000,000 births …

You don’t know at first – these children appear normal, beautiful, healthy. One young paediatrician said to me: “Well, you hear about it during your studies, but very rarely do you actually get to see one of these children …” And one professor, an eminent expert for these illnesses, said to me at the time: “Don’t even wish for your child to survive … this illness is too cruel.” So even if these parents found a ‘cure’ – at what stage in their daughters’ degeneration would it intervene? *If* they survive – then *how*? But of course, for the parents’ souls, *anything* would be better than for their daughters to die … All of these are heart- and mindbreakingly hard questions to ask and consider …

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If your children were born healthy, please DO realize how incredibly blessed you are …! These cases you never see tend to be locked away behind hospital walls … I’m just glad that there is a tiny bit of support for parents like the Grays, parents of children with very rare, genetic inherited diseases, from organizations like for example CLIMB in the UK, or ‘achse’ in Germany. And that there are children’s hospices. At least that. At least support.

If you believe in prayer, then pray for these parents, Kristen and Gordon, to hang in there, and pray for these little girls, Charlotte and Gwenyth, not to suffer too much … it is extremely cruel on all four of them.

I’m still not sure though whether donating money is the answer …

This is a great, big life dilemma of the kind of which, as we are young, we may not even realize they exist, or hope they pass us by, and as we grow older, they may gradually catch up with us – enter our lives, or the lives of people we know – and we learn ‘the hard way’, i.e. by experience, that a) no, we are not special, we don’t get spared and b) sometimes all we can do is exactly that: experience, notice, suffer through it, endure, accept, mourn – but say in the end: It is as it is. Life. “Always wonderful and hard – simultaneously“, as the German filmmaker Doris Dörrie once worded it so fittingly when asked about how she went on after the untimely death of her first husband, father to their then-young daughter, from cancer.

Does such experience necessarily make any of us a better person? With everything I have experienced in my own life, and it wasn’t easy, I still don’t know … I guess it just makes us people who have experienced more of ‘full catastrophe living‘, as mindfulness teacher Jon Kabat Zinn calls it …

Hopefully it can make us a bit wiser and a bit more compassionate towards others, rather than bitter and closed-up? And perhaps, in the end, “no longer judging” the ‘it is as it is’, as my mentor Dr. Albert Zandvort described the learning from his own life experience, plus becoming a bit wiser and a bit more compassionate – perhaps that’s what being around here on earth really is all about?

Published by scheubel

Organisational Change Consultant, Coach and Trainer - focus on Corporate Responsibility and Sustainability

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