JW's Story: Dreaming of Becoming a Firefighter

My name is Olivia Pittman. I live in Texas with my three children.

My son JW is 6 and he exemplifies kindness, bravery, and resilience in both his actions and attitude. His lifelong dream is to become a firefighter, inspired by his admiration for firefighters' bravery and dedication. His favorite activities include playing frisbee in the park with his family, racing his collection of small cars on his racetrack, engaging in hide-and-seek with his brother and sister, walking along scenic trails in nature, and enjoying play at the playground with his brother and sister. Last but not least, his warm smile and heartfelt hugs have the power to brighten any room and bring joy to those around him.

JW has a condition called X-linked lissencephaly associated with mutation in his DCX gene. It causes him to have intractable focal epilepsy, global developmental delay, and moderate sleep apnea. JW’s seizures amplify when he overheats. Additionally, the seizure medication’s side effects cause fatigue. His siblings are also on the Lissencephaly spectrum.

For me, advocacy is about making sure children with disabilities and rare diseases are seen as whole people and that their families have a voice.

JW participates in adapted physical education, occupational therapy, and speech therapy at school, which have significantly enhanced his communication abilities and social interactions, as well as his fine and gross motor skills. These improvements are encouraging him to become more independent and boost his self-confidence each day. Without the protections and accommodations provided by Section 504 and IDEA, along with access to free and appropriate public education, he would face substantial challenges in keeping pace with his peers and in overcoming resistance to participation in various activities.

Quality and affordable healthcare are everything to our family. Without Medicaid, it would be nearly impossible for us to afford his life-saving seizure medication. He has tried numerous medications for their intractable focal epilepsy without success, but at last, found one that works for him.

JW’s siblings, Reyna and Cooper, are also part of our family’s journey with these conditions. Cooper has X-linked lissencephaly due to a DCX gene mutation, along with global developmental delay, speech delay, oropharyngeal dysphagia, intractable focal epilepsy, and chronic gastritis. Like JW, he's struggled to find the right medication to manage his seizures. Reyna has subcortical band heterotopia (SBH), mild neurocognitive disorder due to SBH, ADHD, and anxiety.

Without the protections of the Affordable Care Act, we would face overwhelming financial hardship, limited access to essential diagnostics and treatments, and a significantly lowered quality of life. The Americans with Disabilities Act also helps us participate in our community. For example, a parking placard, an ADA accommodation, has made it so that we can make it to appointments, therapies, treatments, accessible community events, and our apartment safely in case of emergencies.

For me, advocacy is about making sure children with disabilities and rare diseases are seen as whole people and that their families have a voice. I have worked in healthcare, but navigating the healthcare and education systems as a mother of children with rare neurological conditions has given me a very different perspective. After recently discovering through an MRI that I also have Double Cortex Syndrome, I have an even deeper understanding of how important it is to be heard and to have access to appropriate care and support. I advocate because I want my children and other families like ours to have the opportunity to receive the healthcare, education, accommodations, and support they deserve without having to constantly fight to be understood.

Most importantly, I want my children to be known for who they are and what they love, not defined by their diagnoses.