Members

Hi my name is Nina Badalamenti I live with my husband Vinny and my handsome son Vincent. We live in Pennsylvania, USA. We also had two sons that passed of the gene mutation in wwox. My son Santino was born 2003-passed 2005. Luciano was born 2015-passed 2019. Luciano and Santino were brave little superhero’s very close to our hearts. Luciano Story through Facebook page he made so many people aware of WWOX during a time where very little was known. He brought together families from across the world with children also diagnosed with WWOX. As a mom who lost two children I decided to put a group together called RARE diseases on Facebook and I though I was alone and then I found so many families and I was so blessed and at the same time I was upset to see how many children have wwox.

Hi, I'm Emma. I live in the UK, in North East England. My husband Rich and I are proud parents to Sophie and Joseph. Sophie and Joseph both have WOREE syndrome due to a wwox gene mutation. We are so pleased to be involved in the wwox foundation. For many years we were lost and grieving without a diagnosis for our daughter. After Joseph was born and there was an update to the genetic tests available we finally got a diagnosis and found our wwox family. I hope that by being part of the wwox foundation we can help support other families with this diagnosis and help them to navigate the complex world of wwox, feeling a little less lonely than we did, knowing there are others who understand. Our doctors were almost baffled by our children, our hope is that the wwox foundation raises awareness of this condition for medical professionals as well as supporting families.

Karla

Karla Sanjines

Member

Hi, my name is Karla. I am the mother and full-time carer of a beautiful yet profoundly disabled little girl called Lucia, who suffers from WOREE syndrome.
We live in Sydney, Australia but I am originally from Bolivia and my partner Johann is from South Africa.
Like so many first-time parents we were excitedly anticipating the birth of our first child. Unfortunately, from birth our daughter started suffering from devastating seizures and global developmental delay. After a year of continued hospital admissions, we finally received a diagnosis that our daughter was suffering from an extremely rare genetic mutation affecting the WWOX gene. The only advice we received  from our daughter's geneticist was that there is no known cure and that we should love and enjoy our daughter as much as we can every day. From that point on we vowed to find a cure for our daughter and also to provide hope for other parents in the future.

 

© 2019 by The WWOX Foundation. Privacy Policy

Logo.png