Brooks : He Brought Us Joy

Being given the side-eye by Rachel was worn as a badge of honor in the NICU. Even nurses filling shifts from other areas had already heard about her. She seldom cried—even in the worst circumstances. Her smile could melt anyone’s heart. She loved being the center of attention, but only at her discretion. She will…

We continue to keep Elizabeth’s memory alive every day. The pictures from the hospital hang on our wall. Every time we see a rainbow, we say that’s Elizabeth looking down on us. We talk about her often—when we try something new or reach a milestone, we include her in the conversation.

We now live day to day, never knowing when God may call our son home. Watching him slowly decline has been devastating for our entire family—mom, dad, and all three of his brothers. And unfortunately, there is no cure for this disease.

Dante struggles to understand why he cannot do the things other children his age can do, and he requires 24-hour supervision. Much of his daily life is guided by medical needs rather than typical childhood milestones.

Danielle’s condition impacts every part of her life. She likely has a reduced life expectancy, and I know I’ll miss milestones most parents expect, like her going to college or getting married. My goal is simply to help her live as healthy a life as possible.

Davis is such a happy, sweet boy. He is the strongest person I’ve ever known. His accomplishments may look different than others, but he has had to work so much harder for every single one. We are incredibly proud of him.

Learn what rare genetic diseases in children mean for families, including Lissencephaly, Sanfilippo & Leigh Syndrome, plus support resources for caregivers.

As the weeks went on, more symptoms began to appear. Serenity started having seizures that stopped her breathing every few minutes. That’s when I knew she was suffering, and we were faced with the hardest decision we’ve ever had to make. We never wanted this outcome, but we knew it was coming. And when the…

We worked hard to become heart defect experts—something we never imagined we would need to do. We had barely heard of congenital heart defects before this, yet they are the most common birth defect, affecting about 1% of the population. At first, we were terrified, but over time we learned to accept this new reality.

After everything happened, samples from Amari’s umbilical cord were sent for testing. It took just over six months to receive the results. That’s when we finally received a diagnosis: Walker-Warburg Syndrome, an extremely rare and severe form of muscular dystrophy that affects the brain and eyes. Only about 1 in 100,000 babies are born alive…