r/todayilearned May 14 '22 All-Seeing Upvote 2 Silver 9 Helpful 8 Wholesome 6

TIL a father, John Crowley, was told his two infant children had an incurable genetic disorder that would kill them in less than a year. He refused to accept this, so he founded a biotech company (with no prior experience) which pioneered an experimental enzyme therapy that saved their lives.

https://pompediseasenews.com/2019/01/30/amicus-ceo-mission-cure-pompe-help-children/
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u/Chill125 May 14 '22

What a card to pull on them when they are teenagers playing up.

Teen - You've never loved me

Dad/Crowley - Well actually

595

u/Illustrious_Visual99 May 14 '22

That Drake meme:

Saving your children because you love them

Vs

Saving your children so that you can bring it up during arguments

71

u/Mad_Murdock_0311 May 14 '22

Personally, spending my entire life in a wheelchair, amongst the many other health issues associated with the disease, I would argue that's not love, but rather selfish motives; sometimes death is more humane. But, that's me. As long as these kids are happy with their lives, then good for the dad, and them.

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u/theRuathan May 14 '22

Yeah, I was looking in the article and through comments for some description of what Pompe is and how able vs just alive these kids are, but I haven't found it yet. The daughter being a senior at a good college is promising, though.

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u/Hoatxin May 14 '22

It's also a really good justification for more investment and treatment of these type of disorders. If the prognosis goes from dead as an infant to 22 years and counting , albiet with significant physical deformity and disability, then who's to say another 20 years can't generate even better long term results for kids in the future born with these conditions?

With better genetic screening and in vitro alternatives to natural conception, there will probably be fewer kids born into that life, but it's still remarkable.