ROANOKE, Va. (WDBJ) – Jamia Cowens is 23 years old with two children and has become a full-time advocate for her 1-year-old daughter who has a rare life-threatening disease.
Baby Mah’Lani has a condition called Parkes Weber Syndrome, a rare birth defect that leaves the blood vessels in her left leg tangled, causing what’s called a port-wine stain.
If those blood vessels aren’t treated properly, they can separate or even enlarge, potentially becoming cancerous or even deadly, causing cardiac arrest and heart failure. There is no cure for it.
Months of misdiagnosis
For months, Cowens said she tried to convince doctors what they were seeing was caused by a family history of a RASA-1 gene mutation. That gene helps the body’s cells grow properly and aids blood vessel development…