Phoebe was one of the Butterfly Children, so called because she suffered from a rare condition that caused her skin to be as fragile as a butterfly’s wing.

Even the softest bed sheets, or the seams inside her clothes, were enough to cause painful blistering, and her throat was so fragile that eating was always difficult.

Phoebe’s condition – Epidermolysis Bullosa (EB) – was diagnosed when she was a baby. Phoebe is pictured (above right) with her cousin Lauren who also suffered from EB. The two incredible girls supported each other through countless operations for symptoms of their cruel condition such as webbed fingers and clubbed hands.

First children

When Phoebe was a toddler, she was one of the first children to come for respite care at our newly opened Ty Gobaith hospice with her mum Caroline and dad Vince. She thoroughly enjoyed her first visit and regularly came to say after that.

“We loved it and she loved it. We all used to stay together with Phoebe and her brother and sisters Bethany, Connie and Robert,” recalls Vince.

“The nurses were amazing with Phoebe and really understood her condition, and she loved all the activities she got to do, especially baking in the dining room, all the arts and crafts, and mixing in with all the other children.

“She also played a part in designing the teenagers’ lounge so her legacy will live on forever.”

Phoebe died on June 25th, 2020, aged 19, and, because of Coronavirus rules, her family have been restricted to a small funeral.

Celebration of life

However, they are planning a big celebration of her life when it is possible to bring all her family and friends together. There will be so many people there, including the friends she made at the dance classes that were her passion.

“She loved Jane’s School of Dance in Denbigh and would squeeze her little feet into tiny ballet shoes even if they hurt,” says Vince.

“The dancing would form blistering but that wasn’t going to stop her. She may only have been a dinky dot but she was a fighter to the end. Brave as a lion.

“We cannot thank enough those who played a vital role in Phoebe’s care from birth to death, including Ty Gobaith who supported us so much.”

We can only be here for families like Phoebe’s with your support. Click here to find out how you can donate to Ty Gobaith and receive a beautiful memory butterfly.