A Heartfelt Reflection from the 1st Spina Bifida Kids Assembly

Some events leave smiles. Others leave memories. But for many families who attended the 1st Spina Bifida Kids Assembly Nationwide, it left something far deeper — the feeling of finally being seen, understood, and no longer alone.

One parent, Tabitha Ylarde, shared a deeply moving testimony after attending the assembly with her daughter, Raya. Her words reflected the quiet struggles carried by so many families raising children with spina bifida. The struggles often hidden behind brave smiles and unwavering love.

“My heart will never be the same after today,” she wrote.

Inside the gathering were parents who instantly understood one another without needing long explanations. Families bonded not because of shared hobbies or backgrounds, but because they carried the same fears, pain, exhaustion, and hope for their children.

They understood the countless hospital visits, surgeries, MRIs, urodynamics, catheterizations, sleepless nights, and silent breakdowns after spending an entire day trying to stay strong for their children. They understood the fear of infections, the uncertainty of the future, and the heartbreak of watching their children fight battles they never deserved.

As stories were shared one by one, tears quietly filled the room. Because only families living this journey truly know the weight of it.

In the middle of that emotional moment, Tabitha experienced something she would never forget.

Her two-year-old daughter, Raya, hugged her and thanked her while asking about why she has spina bifida. Despite her young age, Raya already understood that she was different. Yet every day, her mother reminds her that she is deeply loved, special, and one of the greatest blessings in her life.

Those words from her little girl broke her heart, not out of sadness alone, but because behind Raya’s innocent smile is a tiny warrior who has already endured more pain than most people ever will.

Tabitha shared a powerful message for her daughter:

“You will never be defined by spina bifida. Not by your scars. Not by your condition. Not by the things your body struggles to do. You are defined by your heart, your courage, your kindness, and the way you continue smiling despite everything.”

It was a reminder that children with spina bifida are far more than their diagnosis. They are fighters, dreamers, joyful souls, and children deserving of love, dignity, and a kinder world.

Beyond the tears, the assembly also became a place of healing and hope. For many parents, it was the first time they truly felt they were not alone in this journey. There were other families carrying the same heartbreak, offering silent understanding, strength, and encouragement to one another.

The 1st Spina Bifida Kids Assembly became more than just an event. It became a safe space for families to breathe, connect, and find comfort in a community that understands their realities.

She also added that through this gathering, the Spina Bifida Support Group Foundation, Inc. created something meaningful for every family who attended. A reminder that even in the hardest moments, there is still hope, community, and love strong enough to carry one another forward.

For every spina bifida warrior and family silently fighting battles unseen by the world:

you are seen, you are honored, and your strength inspires more people than you know.