When baby Derek Leon was born, doctors warned his family that he might not survive for long.

Diagnosed with Holoprosencephaly (HPE) — a rare condition in which the brain does not fully develop into separate hemispheres during pregnancy — Derek’s future was filled with uncertainty from the very beginning.

His mother, Amber Collins, remembers the fear and heartbreak she felt while pregnant. Early scans suggested that something might be different about her baby, but it wasn’t until she was eight months pregnant that doctors finally explained the full severity of Derek’s condition.

“They told us he might not survive birth,” Amber shared. “We prepared ourselves to say goodbye before we even had the chance to meet him.”

Doctors explained that babies born with severe forms of HPE often face major medical challenges. During his first months of life, Derek spent long periods in hospital under close observation after developing breathing difficulties and feeding complications linked to his condition.

Despite everything, Derek kept fighting.

Amber and her partner were faced with impossible decisions during the pregnancy, but in the end, they chose to continue — hoping only for the chance to hold their son, no matter how short that moment might be.

“We were ready to let him go,” Amber said softly. “But when he arrived, he wasn’t suffering. He was trying so hard to stay with us.”

Now, every small movement, every time Derek opens his eyes, every little smile feels like a miracle to his family.

Amber began sharing videos of Derek online to raise awareness about children born with rare conditions. While many people responded with love and support, some comments deeply hurt the family.

Instead of seeing Derek as a child fighting for his life, some people posted cruel remarks and judgmental assumptions about his appearance and condition.

Amber later spoke out against the negativity, asking people to show compassion before judging families facing difficult medical journeys.

“He’s not ‘it.’ He’s our son,” she said. “He deserves kindness just like any other child.”

The young mother explained that she is always willing to answer respectful questions about Derek’s condition because she wants people to understand that children like him are still capable of feeling love, comfort, and happiness.

“He may be different,” Amber said, “but to us, he’s perfect.”

Today, Derek remains under medical care and continues to surprise doctors with his strength. Though his future remains uncertain, his family says they are grateful for every single day they get to spend with him.

“We don’t know what tomorrow looks like,” Amber shared. “But right now, Derek is here, he’s fighting, and he’s writing his own story.”