This #MemberMonday meet Southeast Region Parent Ambassador Stephen Carlin!
Steve lives in Clayton, NC near Raleigh with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet syndrome (DS) in 2013 at the age of four. Being self-employed has allowed Steve the flexibility to coparent and actively advocate for Zora. He was a part of lobbying for access to CBD as a treatment option for epilepsy at the NC state legislature. In order to gain the attention of the NC state legislators he also conducted several media interviews and became active through social media. Legislation allowing use of CBD for intractable epilepsy in North Carolina was initially passed and amended in 2013. Another result of his efforts to insist on better treatments for his daughter was the opening of a Epidiolex study location at a local university hospital.
Steve has always strived to not let Dravet define their lives while still providing the best quality of life possible for Zora. The struggle of coping with all the challenges associated with Dravet syndrome can be isolating. Finding the support that comes with understanding the depth of Dravet is difficult to find, even in the general epilepsy community. Steve’s search for support lead to the Dravet Syndrome Foundation (DSF). The knowledge and experience found through DSF was very empowering. Steve finds that the genuine interest shared by this community is uplifting and he wanted to be even more involved. Steve joined as the first male Parent Ambassador for DSF and is eager to support fellow dads on their journey as they parent a child with DS.
Steve and his family attended the 2018 Dravet Foundation conference in Colorado for the first time. The sense of understanding and support was inspiring. Steve then joined #teamDSF as the first male Parent Ambassador in early 2019! Steve hopes to continue advocating for the Dravet community and provide real support for those affected by DS in his area. Steve hopes that leading by example can show other families that life with the challenges of Dravet also has an abundance of rewards.
Join Steve as he discusses the challenges of parenting a child with DS and offers advice and support for Dravet Dads in our upcoming live support group: Dravet Dialogues. This is available to parents and caregivers in the DS community through our private Facebook group. For more information on how to join this group visit www.dravetsupportgroup.org.