people who inspire me: Jessica and Ava Jacobs

Below is the story of a Mother and daughter who have deeply inspired me over the last 4 years. Stay tuned for future posts from the "People who inspire me" series. I hope these stories will help you dig deep to find the hero that lives within you and pick yourself back up. You just might find yourself lifting others up around you at the same time. 

The year is 2005, I am attending college in Gainesville, FL, and starting a part-time job requiring me to wear orange shorts and scrunch socks. One by one, I build a tribe of friends that have stood the test of time 16 years later. Little did we know then, how much we would need to lean on each other in the years to come. One of those friends, a tall, tanned beauty named Jessica, would be presented with a true test of resilience and love when her first daughter Ava was born with CDKl5 in 2017.

Two months after Ava was born, a seemingly healthy baby girl, the spitting image of her mother, with light brown wavy hair and olive skin, Jessica noticed her twitching her arms and legs for short bursts, followed by periods of loud crying. Concerned by these movements, she contacted her Pediatrician, and after several sleepless nights in the hospital, Ava was diagnosed with infantile seizures of unknown origin. Jessica and her husband had their world turned upside down in a matter of days. When most would sit in a state of shock, attempting to process this heartbreak, Jessica, fueled by her love for her child, sprung into action. She was determined to find out exactly what was causing her daughter's seizures and refused to accept that there was no known cause. She took Ava to specialist after specialist with the hopes that someone out there would recognize these seizures. When she wasn't driving Ava to appointments, she was reading. Through tear-soaked eyes, she searched for answers and begged God to heal her daughter of this strange ailment.

Finally, a genetic test revealed the culprit, CDKL5. A mutation in this particular gene affects normal brain development and causes seizures, which further affect brain development and can limit verbal and physical milestones. Most commonly found in girls, Ava exhibited many of the classic markers for this rare mutation. With the relief of finally having an answer hanging before her, the fear of what she had once read about this unforgiving disorder sank in like a teabag steeped in steaming hot water. Slowly and then all at once. She knew exactly what CDKL5 was. Long nights on her laptop searching for answers brought her to it long before this day. She knew there was no cure, and until there was, Ava's treatment plan would consist of trying to decrease the frequency of her seizures, to allow her brain the chance to heal and develop. This would prove to be anything but straightforward and the steroids prescribed by her doctors mostly resulted in weight gain with little to no decrease in seizures. Jessica's heart was broken. She wondered what Ava's future would hold and how different it would be from what she imagined when she was growing in her belly.

She found a place of understanding and a resource in an online community of parents whose children have been diagnosed with CDKL5. There, she could be honest. She could talk about how angry she was and how she often asked God "Why did this happen to my baby?" It was also there that she would be introduced to homeopathic treatments like a special blend of CBD oil that was helping hundreds of children with neurological disorders. This would prove to be the most effective treatment she has found to date for Ava's seizures. She still experiences seizures, but the frequency and length of them are much improved. Soon enough Ava was in physical therapy with a therapist who was passionate about helping her do the seemingly impossible. From learning to hold her neck upright on her own to standing with assistance, these sessions have made all the difference. It brings nothing but happy tears to my eyes to receive videos of her progress and see the pure fight with which she wants it! It's written all over Ava's face. She is indeed her Mother's daughter, and I am so thankful to have them both in my life.

When I first lost my leg and experienced feelings of helplessness, I often thought of Ava. I visualized her fighting to stay upright as her legs shook. I watched her therapy videos over and over again to feel her strength radiating through. Her spirit truly is contagious. Each time I see her and her Mother, I get to witness the progress Ava has made since our last visit and I feel my cup fill back up, knowing that I can do so much more than my body and mind tell me I can.

Although on the exterior, Jessica and Ava are covered in more beauty and grace than anyone, it is what lives within them that continues to inspire me and show me what true love really means.

My dear Aspiring Ava, to know you is a lesson in tenacity and compassion.

Please consider helping Jessica and her loved ones spread awareness for CDKL5 by visiting 

https://www.cdkl5.com/donate/ and making a donation in Ava's name. Every penny counts in the fight for a cure!