Support Caper Mesa's Journey to Recovery

Andalusia & Charles Mesa married in November of 2022 and were excited to start a family. In the Spring of 2023, they got pregnant. Andalusia had a normal full-term pregnancy and with diligence did all the things an expectant mother should. On November 30, 2023, Caper Mesa was born. After a difficult labor Caper was in respiratory failure and taken to the NICU. Although this was traumatic, it would not be the most difficult part of the journey. It was touch-and-go for Caper, and he would have difficulty maintaining various metrics. Caper would have family with him 24 hours a day on shifts. His parents advocated for him to try to get to the bottom of what was going on and after much persistence, they got Caper an EEG. This revealed that Caper was having almost constant seizures (hundreds a day) that did not present in a typical manner.

Caper was immediately put on anti-seizure medication and intubated. After further advocacy from his parents, Caper received an MRI. Andalusia & Charles were called into a conference room to receive their results. They were told Caper had an extremely rare condition called hemimegalencephaly, a malformation of the brain. The parents were told to be prepared that Caper may not be able to see, walk, speak, and have developmental issues among other devastating realities. However, they were told that with surgery and having caught this at such a young age those things may be able to be mitigated, but there is no guarantee. Surgery was risky, especially at his age. The recommendation was to perform a Hemispherectomy (separating the left and right sides of the brain) and removing a portion of the left-side of his brain. The sooner the procedure was done the more potential long-term benefit and less damage to the healthy portions of his brain, but greater risk of complications at only weeks old and no guarantees.

Andalusia and Charles faced a difficult choice, ultimately they decided to move forward with surgery, and at 4 weeks old Caper had the procedure. The procedure was a success and the family was finally able to come home at 8 weeks old. He would later have the remaining portion of the left hemisphere of his brain removed at 6 months old. Caper just turned one and his parents have continued to advocate for Caper ensuring he gets the specialists and resources he needs, all while navigating health insurance, state resources, and charity organizations. It would be an understatement to say navigating this is difficult, frustrating, and time-consuming, all while trying to hold on to their full-time jobs. Caper has made slow incremental improvement with his motor function, hearing, vision, diet, and development. Each month seems to come with new diagnoses: Epilepsy, Cerebral Pasley, and vision impairment among a few. Despite all of this he continues to be a warrior and his parents are the best champions a child could ask for. We are setting up this GoFundMe fund to support Caper’s ongoing needs including; medical expenses, medication, adaptive equipment (i.e. wheelchair, tumble form, physical therapy tools), out-of-network developmental and physical therapies, ADA upgrades to the home, a wheelchair accessible car, and respite care services.

Our goal is to raise $100,000. Any and all support, large or small, is greatly appreciated. You can follow Caper on Instagram @caperland_ for his progress.

We thank you from the bottom of our hearts,

Tara, Andalusia, Charles, and Caper