Hi, I am Sarah, Elani’s mom!
We are grateful to have the ability to share our journey with PVNH during #marchonpvnh month to bring awareness to this disorder in hopes that one day our daughter and others like her will live a symptom free life.
Elani was diagnosed with extensive bilateral PVNH at six months old. She started presenting with different symptoms from birth including a GI disorder known as FPIES, global developmental delays, sleep disturbances and fluid filled lateral ventricles in the brain.
Since her diagnosis, Elani has developed many different seizure types and is considered medication resistant after going through and extensive list of medications.
Elani will be admitted to the hospital this March to start the ketogenic diet in hopes to reduce her now daily seizures.
Besides the many obstacles Elani faces, she is still filled with true joy, happiness, love and brings a smile to everyone she comes across.
Elani is strong, smart, witty and capable despite being nonverbal. Even after we were told during infancy she may never walk, she has developed a natural talent for gymnastics, loves being upside down and can run across a high beam.
We take things day by day but have learned to celebrate the moments and milestones of success as they come and stand strong as a family through the times that are hard.
💗💛💜💛💗 #MarchOnPVNH #PVNHAwareness #Epilepsy #EpilepsyAwareneness #RareEpilepsy #Seizures #Seizureawaeness #PVNHcommunity #PVNHloud