Today is rare disease awareness day, and as you know, our home has been impacted by a rare genetic brain abnormality.

But “rare” is irrelevant when it happens to your child.

Lissencephaly is believed to occur in around 1 in 100,000 births.  Due to the shortened average life expectancy, its prevalence among the population is even more rare.

Within Lissencephaly, the breakdown is believed to be as follows:

  • Type 1 – 43%
  • Type 2 – 14%
  • Other – 43%

Our boys do not yet fall in to known types of Lissencephaly, so they are in the “other”, unexplained group and may contain a gene mutation shared with few in the world, or possibly unique only to them.

Our boys are also identical twins, which occurs in 1 in 300 births.

If you combine that they fall in to the 43% of 1 in 100,000 AND are 1 in 300…that comes to 143 in 10 billion births.

The current population of the ENTIRE WORLD is estimated to be just over 7 billion.  And as alluded to earlier, the active prevalance will be much lower than the birth rate given that the average life expectancy is a far too short two years.

You might say these little guys beat the odds just to exist.

Here’s to beating the odds for years to come.

we love our rares

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