Sometimes, children find it hard to express their feelings. This means parents need to be more aware of what their child needs. These parents did just that, but sadly, it was beyond their control.
At the dentist, they found that he had some swelling in his teeth, likely due to a tooth infection. But instead of getting better, the swelling continued to grow.
When nothing seemed to help and his swelling got worse, his parents quickly took their upset child to a hospital. There, they received heartbreaking news: he had tumors on his brain and spine.
What was believed to be a tooth infection turned out to be a rare type of cancer called Rhabdomyosarcoma. This cancer is so rare that it affects only about 55 children in the UK each year.
The first signs of this diagnosis are swelling or lumps that can appear on the body.
“Our world fell apart,” said Ethan’s father, Mark, in an interview.
Doctors discovered that Ethan’s cancer had spread to his lungs and bone marrow. They decided to start a strong treatment plan that included chemotherapy and radiotherapy.
But after nine months of treatment, Ethan passed away at just 9 years old.
After his death, his parents were very upset and called the treatment methods used for their son “embarrassing” and outdated. The grieving parents started a fundraiser in Ethan’s name to help support research.
Mark, Ethan’s father, described the treatment methods as “embarrassing” and said they are very outdated. They set a goal of $62,000 for their fundraiser, and about half of that has already been raised.
“We don’t want other families to go through what we’ve experienced; it’s terrible,” said Ethan’s family.
After his death, the issue of funding research on childhood cancer has been discussed in parliament, which is an important step toward ensuring more money is directed to this area.
If you found this story interesting, check out the one below about a three-year-old who passed away after dental procedures.
If you spot a purple butterfly sticker near a newborn, it is important to understand its meaning
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.
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