My name is Bailey Wallace Lara I am married with 3 children.  My son, Sebastian, is now a young adult at 19 and I have twin daughters that are 11.  Scarlett and Brooklyn.  For 6 years we had been on the search for answers and we were relieved to find a diagnosis and then the symptoms made sense. Brooklyn was diagnosed with Skraban Deardorff syndrome in 2018.  At the time we had only know that there were 12 other cases reported.  It was life changing and so helpful to have the diagnosis and the support from other parents.  I no longer felt alone, I felt like I had a new family.  I see Brooklyn in the other patients of Dr Skraban and Dr Deardorff, and I felt invested in those kiddos.

When I am not at the office, we make it a priority to spend time as a family playing games and watching movies.  Each weekend we take Brooklyn and Scarlett to their music lessons and church while sprinkling in swimming lessons.  Brooklyn loves to dance and is in adaptive choir.  I am also on the board of another non-profit.  I am the membership chair for a twin mom organization in my area.

I decided to join the board because I was eager to help grow the awareness of this rare genetic mutation.  As the community outreach chair, I strive to build relationships with the broader community to support the goals of the Skdeas foundation. We aim to increase awareness of this syndrome and educate others to aid our mission.  Increasing awareness is also my personal mission so that I can find ways to support the families that I know.