Changing Faces, Changing Lives

Tag: Apert Syndrome

"From birth, our son has been a warrior." Born with Cystic Fibrosis and Metopic Synostosis, Isaac has been a warrior from birth. Isaac fought for his first breath with the assistance of Neonatal ICU doctors and nurses as well as in the special care nursery to regulate his own blood sugar.
We are incredibly blessed to have our own beautiful Cranio-Warrior, Daisy. Daisy is 2.5 years old and was born with a rare genetic syndrome; Apert Syndrome. Apert’s is caused by a mutation of the FGFR2 gene and because neither my husband or I have Apert’s, it’s a random mutation. The chances of having a rare gem like Daisy is 1 in 65000.
As a young child, Elliot made it very clear what he was going to do in life, which was everything everyone else does “except better”. Despite living with Apert Syndrome, Elliott is experiencing all that life has to offer.
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