When Lindsay Marsh’s son Travis started having seizures at seven months old, she had no idea of the medical journey they were about to embark on. After countless seizures and hospitalizations in those early days, Travis was diagnosed with a rare form of epilepsy caused by two gene mutations: SCN9-A and SCN1—Dravet syndrome (a rare lifelong, drug-resistant epilepsy that begins the first year of life). “As a parent, watching your child endure multiple seizures and then struggle to be himself on his daily medication and rescue medication breaks our heart. It is also terrifying.” Lindsay shares.
Lindsay reached out to Raising Special Kids for support, guidance and assistance with navigating the Arizona Early Intervention Program and the Division of Developmental Disabilities. She connected with a Family Support Specialist who also happened to have a child with severe epilepsy and found comfort in talking with someone who truly understood some of the challenges she and her little Travis were facing. About her experience with Raising Special Kids Lindsay shares, “The fact that the employees of RSK have been through what we ‘newbies’ are going through is such a relief. I also really value how easy it is to reach someone if I have a question or need support.” Lindsay is truly grateful to have ongoing support from Raising Special Kids whenever she needs help.
When Travis was diagnosed, the Marshs knew they had much to learn. Lindsay has taken on this challenge and become an advocate for her son and for bringing epilepsy awareness to our Arizona community. Travis is now almost three years old and just starting to show delays in his physical and social skills. He was also recently diagnosed with autism. He is in speech and physical therapy and cognitively, Travis is developing as a typical little boy, achieving and even surpassing milestones in his age range. “This keeps us optimistic and makes us very proud as he reaches these stages and transforms into a toddler much like his twin brother Tyler.” The Marsh family is hopeful for the future as they seek out treatments and medical advancements for Travis’s epilepsy and are grateful for their little boy and his fighting spirit! They are also thankful Raising Special Kids is always there for support, and that they are not alone.