17 Jan Lucas’ Superhero Story
Lucas is a SLC13A5 Superhero. Here are a few fun facts Lucas’ family shared with us!
- Name: Lucas
- Age: 3
- Homestate: New York
- Itsy Bitsy Spider is Lucas’ favorite song.
- He loves high-pitched noises and often starts laughing hysterically when we empty the dishwasher.
- Christmas tree lights are his favorite.
- Lucas will refuse to make eye contact with his speech therapist and just looks away from her if she doesn’t sing to him.
- The pool is Lucas’ favorite summertime activity.
Lucas’ Medical Journey
Our journey with Lucas is a little different. We met Lucas at five weeks old. I knew he was born seizing and was sedated and put on a ventilator to try to get the seizures under control. I don’t know how many times he was in status epilepticus before we met him. We began as his foster parents. His first seizure in our care was seven days after we brought him home.
Lucas was diagnosed with SLC13A5 Epilepsy when he was eight months old. He continued to have status epilepticus episodes every 2-4 weeks until he turned three years old. Every event lasted 20 minutes to just over two hours and required an ambulance ride and hospitalization. By the time Lucas turned three, we had called an ambulance over 35 times. Lucas’ seizures affected his swallowing and he is currently dependent on a G-tube for all nutrition.
We finalized our adoption of Lucas a week before his third birthday. He has remained seizure-free since then — about four months, which is by far the longest stretch we have had.
Lucas has just started rolling over in one direction. He receives speech, feeding, occupational, physical therapies, and vision services. He is starting to learn to communicate using two buttons, we are hopeful an augmentative and alternative communication (AAC) device will enable him to start to communicate more with the world around him.
Like other kids with SLC13A5, Lucas has significant sleep struggles. He is known to wake up anywhere from a time or two to ten times at night. Often he is up for hours. Lucas is a very sweet, social boy who loves to interact with those around him and doesn’t miss a thing going on.