When Millie Smith and Lewis Cann found out they were expecting a baby, they were overjoyed. As there was a history of twins in Millie’s family, she had a strong feeling that she was going to give birth to two little ones, and her instincts were right. The ultrasound confirmed that she was indeed expecting twins, but the doctors told them that one of the babies had a very small chance of survival.
ragically, one of their daughters was born at 30 weeks with anencephaly, a serious condition that affects the development of the brain and spinal cord. They learned that their precious baby had only moments or hours to live.
Knowing this, Millie and Lewis wanted to give her a name before they said goodbye. They chose the name Skye. Millie explained: “We felt she needed a name before she arrived. Knowing she wouldn’t be with us for long, I wanted her to have a name in those fleeting moments”.
The name “Skye” symbolized a connection to a place they could always remember when they looked up to the sky. “We held Skye close as she died. It was the most heartbreaking moment of our lives, but I’m proud that she fought to spend that time with us.” Skye only lived for three hours, a brief time filled with love while her parents cherished her beauty and presence.
After her death, Millie and Lewis were supported by a “bereavement midwife” and given access to a “Daisy Room”, a special room where parents could spend time with their baby before and after death. However, after Skye was gone, her memory seemed to fade; no one spoke of her, leaving Millie feeling like her daughter had never existed, which made her angry.
“Most of the nurses knew what had happened, but as the weeks went by, people stopped mentioning Skye. Other families around me had no idea about our loss”, Millie recalls.
While her other daughter, Callie, was still in the NICU, another mother who knew nothing about Millie’s situation remarked how lucky she was not to have twins. “None of the other parents knew about Skye, and that innocent comment almost broke me. I left the room in tears but didn’t have the heart to explain”, Millie said. “A simple sticker could have prevented this.”
This experience inspired Millie to design a sticker for incubators to mark the loss of one or more babies in a multiple birth. She chose butterflies to symbolise the ‘flown away’ babies and used the colour purple, which is suitable for any gender.
From this idea grew the Skye High Foundation, which promotes the Purple Butterflies initiative and helps raise awareness in hospitals around the world. The foundation also offers a range of purple butterfly merchandise.
“Although I can’t prevent these situations from occurring, I believe the more support we can provide through initiatives like the stickers, the better it will be for others who suffer this loss. It’s an incredibly tough journey”, said Millie. Today, her surviving daughter Callie is seven years old.
“People Only Know Me as a Freak,” The Wolf Man Struggles to Find a Job Outside the Circus
Jesús Aceves has hypertrichosis, which makes his hair grow abundantly over his face and back. Because of his condition, he’s also known as The Wolf Man. But he’s tired of this alias and wants to live a normal life.
Meet Jesús Aceves, a 55-year-old man born with a condition called hypertrichosis, which means he has abnormal hair growth over his body, especially his face. Although married with kids, Jesús isn’t fully happy with his living conditions. He says he and his family suffer discrimination. In an interview, one of his kids mentioned, “People call me names, and they even tell their kids not to be my friends.”
© Chuy, El hombre lobo / Chuy, The Wolf Man / Facebook
He worked in the circus all his life, traveling through several cities. But now, he’s tired of being seen as a freak. As a consequence of years on the road, he’s been known as The Wolf Man.
Back home and not in the circus anymore, he’s facing another challenge: finding a “normal” job. He needs to support his family since his wife works in temporary jobs.
After several failed job interviews, he agreed to try something he had always avoided: shave his face. He relied on his family barber to transform him, even creating eyebrows and lashes.
The experience was difficult since the face is an extremely sensitive body area, but both he and his wife believed that simply by shaving, he would be able to find a job.
Jesús did several interviews, and it’s confident that now he’ll find somewhere to work besides the circus. If this happens, he must shave his face every 2 days.
Although rare, some conditions aren’t impossible to have. Luckily, people find a way to overcome the difficulties a rare condition brings and strive in life. Hannah Tyre, for example, was born with osteogenesis imperfecta, meaning that her bones break very easily. But her love for makeup made her an internet influencer, reaching millions of followers. We hope that, by reaching the mainstream media, people with genetic diseases won’t suffer more discrimination.
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