From the moment JJ was born, my life shifted entirely toward one purpose, making sure he has everything he needs, and more, to thrive.

JJ experienced a brain injury at birth and now lives with significant neurological challenges, including severe seizure activity that becomes most active during sleep. He has been diagnosed with ESES, also known as SWAS epilepsy, a rare and serious condition where near-continuous epileptiform activity occurs during non-REM sleep.

This type of seizure activity does not simply disturb rest. It disrupts the brain’s ability to consolidate learning and build new skills. When left uncontrolled, ESES/SWAS can lead to developmental stagnation or regression. Sleep, which should protect and restore the brain, instead becomes neurologically harmful.

In addition to ESES/SWAS, JJ has cortical visual impairment and developmental delays. His care requires frequent specialist visits in Boston, intensive therapy coordination, medication management, ongoing neurological monitoring, and constant advocacy.

During the earliest and most critical phase of JJ’s medical journey, the support from our first GoFundMe was truly life changing. That generosity helped us navigate hospitalizations, urgent appointments, and early interventions without immediate financial collapse. It gave JJ access to care when timing mattered most, and it gave our family stability in a moment of crisis. We remain deeply grateful for that support.

For the past 2 years and 4 months, I have dedicated my life fully to JJ’s care. I stepped away from working so I can attend every appointment, manage medications, monitor nighttime seizure activity, track developmental changes, coordinate therapies, and respond immediately when something shifts. This is full-time medical management layered on top of motherhood.

The sleep deprivation from nighttime seizure activity has been relentless. Many nights are spent monitoring him to ensure his safety. The constant awareness that ongoing electrical activity can affect his development carries a weight that is difficult to describe. Every therapy, every appointment, every intervention feels urgent, because it is.

We are doing everything possible to give JJ the strongest neurological foundation and the best quality of life we can. This includes:

• Maintaining a reliable vehicle so we can safely travel to frequent Boston medical appointments

• Making necessary vehicle accommodations to ensure he is positioned safely and securely, given his seizure activity and mobility challenges

• Staying in hotels before early morning Boston appointments to reduce neurological stress and exhaustion for him and for our family

• Pursuing adjunctive therapies that insurance does not cover but that support brain plasticity and regulation, including:

• Aquatic therapy

• Hippotherapy, therapeutic horseback riding

• Adaptive surfing

• Therapeutic gymnastics

• Other holistic therapies that promote coordination, sensory integration, and cognitive growth

These are not luxuries. They are proactive efforts to protect JJ’s development and give his brain every opportunity to grow and adapt.

The emotional and financial toll of the past two years and four months has been profound. Managing complex medical needs while raising a young family has stretched us mentally, physically, and financially. We continue to fight with determination and hope, but finances are becoming the limiting factor in continuing this level of care.

Since the day JJ was born, I have made it my life’s mission to ensure his needs are not only met but exceeded. I advocate relentlessly. I research constantly. I show up every single day determined to give him the life he deserves.

At this point, we need help to keep going at the pace his condition demands.

If you feel moved to support JJ, whether by donating or sharing, we are deeply grateful. Your support directly protects his development and helps secure his future.