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Category Archives: #MarchOnPVNH
Elani is strong, smart, witty and capable despite being nonverbal. Continue reading
I was born in 1982. I had my first clinical diagnosis in 2013 and genetics’ confirmation in 2019. My parents were tested in 2020 and they do not have the mutation causing my PVNH. It’s hard to live with the … Continue reading
Finley is a lively teenager who leaves an impression on all who meet him! He has always loved books but his latest love is teaching himself Spanish. He has some struggles too, his left side is weaker and he finds … Continue reading
Hi, I am Anna and I have the honour of being Ethan’s mummy. We live in Merseyside, UK. In 2017, I found out I was pregnant at my 20 week scan we found out we was having a little boy … Continue reading
Our family uses social media to advocate and raise awareness of Elise’s rare neurological disorder Subcortical Band Heterotopia (SBH) and Epilepsy. We have connected with other families around the World who are also on this challenging journey. SBH causes intellectual … Continue reading