Amelia

Four-year-old Amelia Pepper has a rare disorder which 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 our charity.

“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 the Neonatal Intensive Care Unit undergoing tests. During that time, doctors said that baby Amelia had a small head and 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-old Amelia wasn’t gaining weight and was constantly being sick. Then her lungs collapsed, and she had a three-month stay in hospital.

At five-months-old, Amelia had successful heart surgery to repair the hole. But after her operation, her lungs collapsed again. Unfortunately, Ameila’s 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 the hospital as she kept getting viruses.”

In 2023, the family discovered our charity and we helped Sian and Callum to understand what we do and how we provide care and support.

“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 Therapist, 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 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.”

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