A star by name and a star by nature, Seren (which is Welsh for star) loved nothing more than music and twinkling lights when she visited Tŷ Gobaith for respite care.

If you have ever watched Carolau Llandudno – the Daily Post’s huge carol concert in aid of Tŷ Gobaith – at Venue Cymru or on S4C at Christmas you will recognise Seren at once. She adored music and her gorgeous smile meant she starred in almost every video made for the annual event. She even got to meet Aled Jones and Russell Watson at the hospice.

“Seren loved the sensory room with all its sounds and lights, and walks around the grounds. She also had a fantastic time meeting all the celebrities. She had such lovely times at Tŷ Gobaith,” recalls dad Bryn.

Bryn and Liz first became aware that their baby daughter would be very special at the 20 week scan when a heart condition – Tetralogy of Fallot – was discovered. Her anxious parents were told that she would need open heart surgery after birth.

In fact, Seren needed a gastrostomy operation and two separate operations on her heart in the first year of her little life, and spent her first birthday in intensive care. She was diagnosed with Mitochondrial Disease when she was just 2 years old.

Unique in the world

Bryn explains: “This was a shock as we had expected Seren to have an almost full recovery after the open heart surgeries. During last year, when Seren was six, she was finally diagnosed with an extremely rare genetic disorder called POLR2A. There are only 16 cases ever recorded in the world and only two patients with the most severe of the spectrum. Seren was one of the two, she was unique in the world.

“When we had the diagnosis of Mitrochondrial Disease we knew the condition would be life-limiting, but we didn’t know how life-limiting.

“So we decided to embrace every year that we had with Seren, and make the most of the time we had together.”

Bryn and Liz, together with Seren’s big brother Iwan who is five years older, devoted themselves to giving her the very best life.

“She loved music and lights and bright colours,” says Liz. “She also loved water and bubbles and spending time in the hot tub we had installed in the garden for her. She liked nothing better than a pamper in the bubbles and having her hair put up.

“Seren went to Ysgol y Gogarth in Llandudno, where she had an amazing teacher and a really special one-to-one support and lots of friends. Again she loved anything to do with music and lights, but if she didn’t like something she would just close her eyes and pretend to be asleep!”

Visits to Tŷ Gobaith

Seren also thoroughly enjoyed her visits to Tŷ Gobaith, which gave Liz and Bryn valuable time to catch up on much needed sleep and recharge their batteries, and also to spend time with Iwan.

Bryn explains: “We had the reassurance that Seren was in really good hands and that gave us time to make sure Iwan has a childhood as well. He was a young carer for his sister and it was important that he had a good quality of life too. Iwan also enjoys days out and activities with the Sibling Support group such as going motor racing and spending time with other children in the same situation. That’s invaluable too.”

Sadly Seren died in hospital in January aged just six years old. Her funeral will take place at St Asaph Crematorium on Thursday February 11^th at 12noon. Liz and Bryn have asked everyone to wear stars and bright colours in her honour.

‘An outstanding charity’

They have also set up a Just Giving fund in her memory for donations to Tŷ Gobaith to say thank you for the support they have received.

“Ty Gobaith is an outstanding charity that has helped all our family through the hardest of times by respite stays and sibling support during the six years of Seren’s life,” says Liz.

“Seren was an absolute star, star by name and star by nature. She had the most affectionate smile and infectious personality that we and anyone who met Seren will treasure forever.”

Donations can be made in Seren’s memory at: https://www.justgiving.com/fundraising/stars4seren