Newark parents who were told their daughter’s life-limiting condition had never been seen before are supporting a charity appeal.

Four-year-old Amelia Pepper has a rare disorder that means she has a chromosome deletion and a duplication, which affects her development and health.

Amelia and her parents, Sian and Callum, have received care and support from Rainbows Hospice for Children and Young People — and are backing the charity’s Summer Appeal.

“Everything Amelia has, was all just unknown,” said Sian. “For several weeks, doctors knew there was something different about her, but they didn’t know what.

“We wanted answers, but we were waiting on tests, and they just couldn’t answer our questions. It was made even harder for us as it was covid times and our family couldn’t even visit us.”

Born with a hole in her heart, Amelia struggled to feed. Her temperature was too low, so she spent three weeks in a neonatal intensive care unit undergoing tests. During that time, doctors said that baby Amelia had a small head, small jaw, and an extra crease on her fingers, which indicated there may be further complications.

She also had congenital glaucoma in her eye, which meant the optic nerve was damaged due to increased pressure.

At four months Amelia wasn’t gaining weight and was constantly being sick. Then her lungs collapsed, and she had a three-month stay in hospital.

She underwent successful surgery to repair the hole in her heart, but after the operation her lungs collapsed again, and her left eye also ruptured post-surgery.

“There was just so much going on for Amelia and her actual condition isn’t on record, so we don’t really know what that means,” said Sian.

“We waited for the phone call, but it did not answer our questions due to Amelia’s unique diagnosis. It was really hard. And when we did get a diagnosis, we were told she is the only one in the world.

“Amelia has been through so much. The first 18 months of her life were back and forth to hospital as she kept getting viruses.”

In 2023, the family discovered Rainbows and staff from the charity helped Sian and Callum to understand what the hospice does and how it provides care and support to more than 750 babies, children, and young people.

“Hearing about Rainbows, it all made sense,” said Sian. “Rainbows is absolutely beautiful. When we came for our first family visit, we couldn’t believe how everyone was so lovely. It was all so friendly and the facilities were amazing.

“Amelia’s conditions were many and complex and coming to Rainbows was where we were confident her needs were understood and catered for.

“We went swimming in the hydrotherapy pool. Amelia hadn’t been swimming for two years and it was really special, and we knew that she was safe. She loves music, so music therapy is perfect for her, and she really enjoys the sessions she has at home with one of the Rainbows’ music therapists, Rosie.

“We also love the cinema room as it is so relaxing.

“One of the things I appreciate the most at Rainbows is the freedom to be able to do everything we want all day; it’s perfect for Amelia, and her younger brother, Atlas, also loves it. There are no timescales or appointments. And simple things like not having to cook is so welcoming. We have so many lovely memories. Amelia loves it and it is really special to go to as a family.

“We have also visited the Rainbows Community Hub, which is held on certain dates in the local area, which is a brilliant idea as it is easier for us to get to than the hospice.

“So many families like ours need the support of Rainbows and I do hope people will consider donating to the appeal.”

To support Rainbows’ Summer Appeal, go to rainbows.co.uk/summerappeal or call 01509 638049.

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