One boy, one world, one fight, one life.

Genetics, Mystery Illness, Neurological, Pediatric medicine, Rare Disease, Royal Children's Hospital, Uncategorized, Undiagnosed, Undiagnosed children

So, we know there’s more than one,

We know the cure is; none,

We know the answers will come

But maybe too late for some.

We know it’s a road for many,

We know it’s a devastating journey,

We know it’s not that far away,

We know it’s your neighbour, your friend, your Aunt May.

But we don’t know what is wrong,

We fight to stay strong,

We don’t know what to do,

The clock is ticking too.

We don’t know who can fix this,

We don’t know what might be,

We lost something the day we learnt this fate was meant to be.

Our dreams torn away, in a matter of one day.

But our love only grew stronger and more meaningful and sound

We play, we love, we live, we party and rarely let it get us down.

We have taken this in our stride and we reach for the stars, for no matter what? Where? Who? And when?

As long as we’re together, we are happy again.

Our lives have meaning and our moments are rich,

with two cheeky boys and their funny antics

We will never back down, we will keep the flame alight

Creating awareness, and, never giving up the fight.

There is no turning back; it’s our mission, our goal

To save our child, from this deep black hole.

By Yael Cohn

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15 thoughts on “One boy, one world, one fight, one life.

  1. I don’t know how you and Edan do it. May you continue to find the strength you need to carry you forward. xox

  2. Dear Yael we are all there for you and your beautiful family we will always keep looking for answers for your Maxi

  3. What lovely words Yael. I really hope you find some answers soon and yes, things are truly put into perspective when you go through something this tough. Max is adorable, what a big beautiful smile he has. Good luck with getting closer to an answer. xoxo

  4. Yael, thanks for sharing this. It’s a beautiful poem. I think about you and Maxi all the time and hope some good news will come your way soon.

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