*A bit of a repost*

Glycogen Storage Disease type IV… what is that? THAT is the rare disease that moved in and forever flipped my world upside down. It’s the rare disease that crept up and threatened to take our perfect, precious boy. It’s the rare disease that is so rare, it took nearly a year of dead end searches to find out it was the root of Theo’s illness.

RARE.

Rare is your infant needing a liver transplant to save his life.

Rare is often the reason for the lack of funds in my bank account.

Rare is spending outrageous amounts of money on life saving medications.

Rare is your baby being so weak they are unable to walk until after the age of two.

Rare is isolating, it’s frightening.

Rare has me living in uncertainty.

Rare often keeps me up at night in fear.

Rare is endless lab tests.

Rare is humbling.

Rare changed the way I look at the world.

Rare has me taking less for granted.

As much as there is so much I dislike about rare, I love rare, because without rare we wouldn’t have Theo. Theo is rare.