Alexa Lena's Journey
Alexa Lena Rast was born on September 27th 2007. After she was born I could tell there was something wrong with her face. Her right eye appeared to look larger than the other and her forehead was flat on the right side as well. After voicing my concern I was told by the doctors that she was just squished from birth. I was called over paranoid. I was persistent and took her to other doctors until one noticed what I did. At one month old she was diagnosed with Coronal Craniosynotosis (premature fused skull). At nine months old she had surgery. They removed the skull cracked the fused section and molded the skull to look like a "normal skull". They put her skull back together with absorbable plates and screw. After 6 days in the PICU she was sent home.
She started having Seizures and syncope episodes around the age of 2. We do not know if they are related to the Cranio but she underwent years of testing trying to figure out the cause and a medical plan of action. She was diagnosed with Epilepsy and Vasovagal Synocpe at UCSF. She is now 7 and we live day to day, never taking life for granted. She has some vision and hearing issues due to the bone structure from the Cranio but we are blessed!! As her mother I have vowed to spread awareness about craniofacial syndromes so that parents have the information and tools they need to get their children diagnosed in time!
She started having Seizures and syncope episodes around the age of 2. We do not know if they are related to the Cranio but she underwent years of testing trying to figure out the cause and a medical plan of action. She was diagnosed with Epilepsy and Vasovagal Synocpe at UCSF. She is now 7 and we live day to day, never taking life for granted. She has some vision and hearing issues due to the bone structure from the Cranio but we are blessed!! As her mother I have vowed to spread awareness about craniofacial syndromes so that parents have the information and tools they need to get their children diagnosed in time!
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