At birth, there weren’t many answers for Ellena’s anomalies throughout her body and face or a diagnosable condition to explain her symptoms. But now at 14, Ellena lives every day to the fullest with CLOVES syndrome – a vascular anomaly that is caused by a mutation in the gene called PIK3CA. A condition that only a few hundred people in the world have.
“I have to go through so many things in my life that I never really thought that I’d have to go through,” says Ellena. “I just try to keep a positive attitude no matter what I think.”
Throughout her journey, Ellena has undergone many surgeries and therapies for CLOVES, but at the end of the day, her parents want what every parent wants for their child – to be happy.
“I’d like her to have a normal, successful, adulthood and I’d like for her to be happy and do whatever she wants,” says Rich, Ellena’s dad.
#HereItsDifferent #VascularAnomaly #CLOVESSyndrome
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