While 20 weeks pregnant, we found out that Jovie had Ventriculomagely, leaving her at risk for seizures and other developmental delays. As a result, Jovie was heavily monitored throughout the duration of the pregnancy as we prepared for potential complications after her birth. Although incredibly overwhelmed by the news, we remained optimistic.

Jovie was born on August 18th, 2023 and appeared to be doing well. However, at less than 2 weeks old, we noticed concerning movements. We took Jovie to our local hospital and they confirmed she was having seizures. We were transferred by ambulance to Valley Children’s Hospital in Madera, where we stayed for several days to get an MRI, EEG, and conduct various other testing. As a result, Jovie was diagnosed with epilepsy and put on seizure medication. Over the next few weeks, Jovie had 3 additional hospital stays as her seizures continued and medication was adjusted. Jovie was also aspirating when feeding and put on an NG tube after her second hospital visit. Thankfully, the doctors found the right cocktail of medication and Jovie has been seizure free since October and off of her NG tube at the end of December.

Then, in January of 2024 when we’re starting to feel hopeful as Jovie’s health was stable and she continued to get stronger, we received the devastating news that Jovie was diagnosed with the Tuba1a gene mutation. Our hearts sunk as this diagnosis would forever influence the trajectory of our child’s life. With this condition comes a global developmental delay, Cortical Visual Impairment, feeding issues, epilepsy, a higher risk for hydrocephalus where she may have to under go surgery in the future, hypotonia, hypertonia, ongoing digestive issues.

In spite of everything Jovie and our family has gone through, Jovie is quite resilient, happy and has the sweetest disposition and you can’t help but smile when you’re in her presence. She is progressing at her own pace, with the support of our OT, PT, ABM therapist, Vision Therapist, Neurologists, Neurosurgeon, GI specialist, Geneticist and Pedatrician, Jovie is making great progress. She is no longer on an NG tube and has been seizure free since October and continues to gain strength, and has been more vocal and animated.

Because Jovie’s diagnosis affects all aspects of her life, we will need financial help so that we can best support her as she continues to progress. We’re asking for help to cover both the accumulated and ongoing cost of her medical expenses, which include a $6,000 ambulance bill, $5,000 + for her past MRIs (which we will have to continue to get on a quarterly basis), specialist visits at UCLA and Cottage Hospital, medical equipment, and $450 for ABM intensive therapy which we try to do twice a month and potentially $2,400+ NAPA intensive therapy which will take place in early 2025.

It has been quite a year with our jovial girl and have discovered strength in us all that we didn’t even know existed. T.J. and I are beyond grateful for all of the help and support that we have received this past year. We wouldn’t have been able to show up in the way that we have for our daughter if it wasn’t for the community behind us. This is just the beginning of Jovie’s journey and we truly appreciate all of your love and continued support. Thank you all.