‘When we go to Ty Hafan, nothing else matters’
JUST before Christmas Day 2011, mum Terri Evans received the greatest gift of all when her son Rhys was born.
But her dreams of the perfect festive period at home with her newborn son and two daughters, Teigen and Faith, lay in tatters.
Instead of sharing presents and enjoying dinner together at home the family were in hospital as tiny Rhys battled a heart condition which had been picked up during a routine scan.
The left side of his heart was completely underdeveloped and he spent the first nine months of his life in hospital undergoing countless operations.
“Nothing could have prepared me for that time,” said Terri, from Cardiff.
“My poor Rhys. He was so small, so fragile – it was terrifying to see him go through so much.
“I was physically and mentally drained. I couldn’t cope with it all.”
Rhys was diagnosed with hypoplastic left heart syndrome which means part of his heart is underdeveloped, limiting him from strenuous activity.
“From the outside you wouldn’t think there is anything wrong. He is like a little bottle of pop,” said Terri.
“He is so cheeky and excitable. The reality is we have to be so careful – Rhys can’t even walk down the end of the street without getting tired.
“Some nights he wakes crying in pain from cramps due to his poor circulation. “Like most little boys Rhys wants nothing more than to play in the local park or go to the swimming pool – but it’s just not safe for him without having medical support on hand.”
When Rhys was finally discharged Terri said she felt alone without the support of doctors and nurses.
“It dawned on me – how would I cope on my own?” she added.
“Apart from my mum, who does so much for us, I didn’t have anyone else. Rhys had been cared for by so many amazing doctors and nurses and now it was down to just me.”
Those nine months spent on the ward also took their toll on Rhys’ sisters Faith and Teigen, now aged 11 and 10.
“They needed their mum too,” said Terri.
“Teigen was only four at the time and was so anxious. When we returned home she struggled – she didn’t want to go to school and didn’t want to mix with other children.
“All the while, Faith was trying to be the strong one as the eldest. It was heartbreaking to see the impact of this traumatic experience on my daughters.”
When the family left hospital a nurse mentioned children’s charity Ty Hafan, which looks after life-limited children and their families.
“I decided I would get in touch – and I am so glad that I did,” added Terri.
“Ty Hafan welcomed us into their family and has helped each member of mine.
“On our first visit I was so nervous, I didn’t know what to expect. But as soon as we got there I felt at ease as I realised that finally someone was there for us all.”
Recognising the strain Rhys’ medical journey placed on Terri’s daughters, Ty Hafan got them involved with their Super Sibling group.
“It helped Teigen mix with other children while having the safety of knowing I was still there,” said Terri.
“Her confidence blossomed. Now Teigen and Faith continue to attend all sorts of fun activities with their new Ty Hafan friends. The Super Siblings group saved my girls.”
Rhys is now five years old and a regular visitor to the hospice, where he enjoys music therapy, hydrotherapy and playing in the arts and crafts room or outside in the pirate ship-themed playground.
“Rhys has grown up knowing Ty Hafan as his second family and loves his ‘holidays’ with us there. His face lights up when he is in the playground or the hydrotherapy pool, a fun yet safe space for him. I can’t thank Ty Hafan enough for this.
“When we go to Ty Hafan nothing else matters. The rest I get goes beyond a good night’s sleep. I can stop worrying. The girls and I get to spend quality time together. We love going to bed early and having a sleepover, we get treats, have a face mask and watch a DVD. It’s such precious time, which I can’t normally give to them.
“Ty Hafan means I can be a mum again, to all three of my children.”
As Christmas – and Rhys’ sixth birthday – approaches, the family is always conscious of how many other families across Wales are going through similar difficulties.
This year, the family is supporting the charity’s Christmas appeal to raise much-needed funds so the hospice can raise the £4.3m needed each year to support children and families.
“Every Christmas, I feel so lucky to have my three beautiful children around me,” said Terri.
“I think back to where my journey began and know that there will be families in Wales who will find themselves in a similar situation this Christmas. But I take comfort in knowing that Ty Hafan will be there for them just like they are there for my family.”
To support Ty Hafan’s Christmas Appeal please visit www.tyhafan. org/rhys