Lewis and Millie were delighted when they discovered they would be having twins. Millie’s family had a history of twins, and it was a tradition she was excited to continue. Their joy quickly turned to shock, however, when doctors told the couple that their unborn children suffered from a rare condition called anencephaly. Anencephaly causes developmental issues to occur in the brain, and newborns with the disease typically don’t survive more than a few days after birth.
Sadly, after Millie had an emergency C-section, one of the twins, Skye, passed away. The new parents were rallying around their surviving child in the NICU when another new parent made an off-hand comment that changed everything.
“You’re so lucky you haven’t got twins ...”
The offending woman couldn’t have known about Millie and Lewis' plight, but her comment really stung. Millie knew there had to be a way to keep this sort of unintentional hurtfulness from happening to others. That’s when the idea of the purple butterfly came to her.
"None of the other parents knew what had happened or anything about Skye. The comment was completely innocent and more out of humor ... They [couldn't have known] that I did at one point have two. But the comment nearly broke me. I ran out [of] the room in tears and they had no idea why. I didn't have the heart to tell them what had happened. A simple sticker would have avoided that entire situation."
Raising awareness became Millie and Lewis’ mission. They named their cause the “Skye High Foundation,” after the child that they lost. Now these purple butterflies are popping up in children’s hospitals everywhere!
They say their efforts will be worth it if they can spare even a few parents the pain they experienced.
"Ultimately, I will never be able to stop this from happening, but the more support groups we can set up and put things in place like the stickers, the better it will be. It's the hardest thing anyone has to deal with."
The couple has started a fund for other parents in similar circumstances. Millie and Lewis are doing the extraordinary: turning personal tragedy and loss into hope for others.
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