July 08, 2020 - 1308 views
Ty Gobaith have said an emotional goodbye to a young teenager who recently passed away.
The Conwy based children's hospice which supports families and seriously ill children, made the announcement following the death of 19 year old Pheobe, a young girl who captured the hearts of everyone she met.
Pheobe visited the hospice regularly since been a very young girl and she 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 and her cousin Lauren 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.
When Phoebe was a toddler, she was one of the first children to come for respite care at the 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.
However, the family 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.”
Now in her memory and to celebrate the life of someone special Ty Gobaith has launched 'Butterflies for Pheobe' - a beautiful, lasting tribute to display in your garden for years to come.
You can dedicate your butterfly to anyone who is special to you, even if they haven’t been cared for by Hope House or Ty Gobaith. Whether you dedicate your butterfly in memory or celebration of a loved one, or simply place it in your garden as a beautiful ornament, you will be making a difference for local children and their families.
The beautiful butterflies, standing 46cm tall and 20cm wide, have been specially made for Hope House & Ty Gobaith by the British Ironwork Centre. Your butterfly will also come with a personalised certificate displaying your dedication message to your loved one.
Your kind donation means that each and every butterfly will help Hope House Children’s Hospices continue to be here for seriously ill local children when they need us most. In these difficult times, your support has never meant more to us.
Dedicate your butterfly today for a suggested donation of £20 or more below. To mark the life of Pheobe and your loved ones please visit https://www.hopehouse.org.uk/Appeal/butterflies.
