This is a letter Kedzie wrote to her doctor more than a year ago.
Unfortunately, if she wrote one today, it would be pretty similar. 
This is why we can't wait to have a new treatment option.

The kids all survive by drinking an amino acid formula.

We can't have traditional cakes, so we come up with alternatives. 
This was a Cinderella cake made out of ice.

Owen and Zackary had a SNOW cake with food coloring for their first birthday.
It was a big hit!

Zoe had a flower cake for her 4th birthday.