They both have a rare disease that causes all of the cells of the body to lack elasticity - that is, they stretch, but don't unstretch back down the way normal people's cells do.

This effects every part of their bodies, so bone grows longer and thinner, tendons and muscles the same, all of that is unfortunate and causes some pains, but in the typical isn't horrible, just joint pain and back pain and some development issues regarding muscle strength (my son couldn't walk until he was 2 just because his legs couldn't develop the muscle). The real trouble is that veins and arteries stretch long and thin and like stuffing string in a bag, they can get all twisty which can cause abnormal blood flows and increased clotting (my wife has had two bad brain clots, miraculously small long term effects though).

But of everything, the biggest danger is that the part of your heart that pumps all your blood out - called your aorta, is under extreme pressure because it is where all the blood in your body pumps through to reach everything head to toe. That pressure causes stretches, ballooning, and eventual sudden rupture in the aortic artery right where it attaches to the heart for people with these stretchy cells. We monitor the growth of it, and do yearly full body veinous and arterial imaging to check for such ballooning throughout their bodies, because it can happen anywhere - the aorta rupturing however results in your heart pumping all of your blood straight into your chest cavity.

Some day that's likely to happen to my wife and or kid, and they'll drop dead, kerpoof. It'll likely be sudden. Just got to enjoy it while we can.

We're all dying, they're just going to do it sooner than some of us. My son's 8, I think normal life is the most precious thing of all, so that's what we have. It'll last as long as it can, but aside from the fact that we know our way around hospitals like the back of our hands, we just get to be normal people (who go to doctors frequently). My son does homework, reads nightly, plays video games, has swimming lessons, all the normal life stuff. All the same bratty bullshit as other 8 year olds, frustrations and pleasures.

Normalcy is our goal, for as long as we can keep it going.