Daisie’s Story

Daisie was 2 months of age when her parents started noticing unusual jerky movements from Daisie. Her parents took her to the drs several times with video evidence of what these episodes looked like with the normal response that it was simply colic. She was later misdiagnosed with Ohtara syndrome and told she had a life expectancy of 2 years.
The family later received the correct diagnosis of STXBP1 almost 2 years later.

The parents were tested are neither carry the faulty gene. Daisie has an older brother who is 13 called Riley and a younger brother who will be 2 in October called Jack.
Daisie is unable to do anything for independently, she is PEG fed and non verbal. Although Daisie’s parents were told she would never smile or laugh they get them everyday.
She is her family’s very own hero.