When parents Skye High Foundation founders conceived the idea of the purple‑butterfly symbol, they did so out of raw grief and a desperate need for recognition. When Millie and Louis discovered that one of their unborn twins had a fatal condition, their hopes and fears collided: they were preparing for a birth and a death at once. In the neonatal intensive care unit (NICU), amidst the hum of monitors and conversation about healthy babies, they felt an acute, painful invisibility — a child had died, yet without a way to quietly signal that loss to others, it was as if she never existed. Their surviving twin’s crib became a symbol of silent grief, daily joy mixed with sorrow. When their daughter Skye was born with anencephaly and died within hours, the love they felt for her was instant and profound. Though her life lasted only moments, it left a permanent mark on her parents’ hearts and changed how they perceived love, loss, and the fragility of human life.

That profound grief soon revealed an unexpected challenge: in most hospitals and neonatal wards, there was no way to gently inform staff or visitors that a multiple pregnancy had resulted in loss. Routine questions — “Is it only the one baby?” “You must be relieved it’s just a single” — cut deep. Bereaved families were forced to answer painful questions or remain misunderstood, even as they held a living baby. There was no shared language for a loss that existed not only in absence, but in the presence of a living sibling. Because the grief was invisible, so were their babies. Staff, visitors, even other parents often had no idea that another life had once existed. In that silence lay an additional burden: loneliness, isolation, unacknowledged sorrow.

From that void — and from the deep desire to honour their daughter’s brief life — the purple butterfly was born. The purple butterfly cot card was conceived as a small, simple, yet powerful symbol: placed on or near the incubator or cot of a surviving twin, it quietly signalled that a sibling had died. Those delicate lavender wings offered a silent message of memory, respect, and grief. The choice of the butterfly was intentional — a universal symbol of the soul, transformation, and the fleeting beauty of life; purple was chosen as a neutral, gender‑inclusive colour. Over time, the purple butterfly grew beyond a personal act of mourning: the initiative expanded into the Skye High Foundation, offering cot cards, posters for neonatal units, and networks of support for bereaved families around the world.

What the purple butterfly does — in a single, gentle stroke — is give families the dignity of having their full story recognized. It allows nurses, doctors, and other parents to approach with sensitivity rather than ignorance. It acknowledges both joy and grief: that a living baby is real, but also that a baby was lost. The symbol becomes a permission — for parents to feel their grief, for others to show compassion, for the hospital environment to hold space for remembrance. For many families, it means they no longer need to explain their loss over and over. Instead, the butterfly quietly speaks for them.

Beyond symbolism, the purple butterfly helps build connection and understanding. Through the foundation and the worldwide spread of the symbol, parents who once felt invisible found community. Shared grief and shared recognition — sometimes in the form of memory books, support groups, or simply nods of compassion from staff — became possible. The loss of a twin no longer had to be silent, secret, or misunderstood. Instead, it became visible in a way that felt respectful and healing. The butterfly stands for all babies who took just a breath or even just existed — and whose lives deserve to be remembered, named, and honoured.

In the end, the story of the purple butterfly — sparked by the loss of one tiny life — became a legacy of empathy, remembrance, and compassion. It is proof that sometimes even the smallest gestures can reshape how grief is acknowledged, how loss is honored, and how families are supported. Wherever a purple butterfly sticker is placed — on a cot, door, or medical chart — it carries with it the weight of love, the depth of sorrow, and the light of remembrance. Through that tiny symbol, the lives of babies like Skye are given a quiet, enduring voice: “You were here, you mattered, and you will always be remembered.”