Father's Day is a special day for dads across the UK.

It's the one time of the year dedicated entirely to them, giving sons and daughters the chance to spoil them rotten.

But for Alun Williams it brings back unimaginably painful memories which he knows will remain with him for the rest of his life.

In 2010, his beautiful daughter Elis died at the age of just 16 months old from a rare condition which caused problems with her heart, kidneys, sight and hearing.

"Nothing gets easier. You just learn to deal with it," said Alun, 45.

"Certain things will still set me off now, where I'll just have a little thought, a memory will come in or I'll hear a piece of music and the floodgates will open."

Elis Williams, who was born with the rare condition Charge syndrome, died at the age of 16 months old. She's pictured with her dad Alun

Doctors warned Alun and his heavily pregnant wife Vikki that Elis would be born with a range of severe, potentially life-shortening health problems.

A few weeks after her birth she was diagnosed with Charge syndrome, a genetic disorder affecting one in 10,000 children each year.

As a results Elis was profoundly deaf, had a heart defect and only one functioning kidney.

“We were faced with a parent’s worst nightmare: the idea that we were going to outlive our child," said Alun, from St Athan, Vale of Glamorgan.

"We had two other children who were perfectly fine with no issues whatsoever. You're trying to work out how to deal with it and keep sane at the same time."

Elis with her dad Alun and mum Vikki

Alun said he really struggled opening up about how he felt to his family and friends - and would often break down in private.

"When you first hear about the diagnosis a whole range of things enter your head. You think 'Could I have done something differently? Is it me? Is it something that my wife has done? Is it something that's just happened?'

"The first thing you want to do is make sure everything is okay for the rest of the family. You want to protect them and shelter them from anything that's happening around them.

"I closed up to to everyone. I was trying to be strong for the family and then going away and then having a meltdown myself away from everyone else.

"No-one could see I was in tears the whole time."

Elis spent the first 100 days of her life at the University Hospital of Wales in Cardiff before having an operation in Bristol Children's Hospital to correct her heart defect.

"The procedure took place just a couple of days before Christmas, and we ended up spending part of Christmas Day at the hospital in Bristol. It was definitely a Christmas to forget."

Alun said it was incredibly distressing trying to juggle his time with Elis while being there for his two older children Rhydian and Yvie.

Elis (centre) with her sister Yvie and brother Rhydian

"There were numerous times of crisis because of what Elis had. Every week was a trip to hospital," he added.

"Whenever she went in there was a mad panic about who would go with her and who would stay with the other children.

"It affected work, it affected home life, it affected your general wellbeing and sleep."

Elis, who was extremely susceptible to infections, took a turn for the worse after having her adenoids - small lumps of tissue at the back of the nose - removed.

"Doctors said Elis' temperature was one of the highest they'd ever experienced so they put her on a ventilator," Alun added.

"I nipped back to see my other children, but when I got there the house phone was ringing. The doctors said there wasn't much they could do to help her. Her stats had gone right down and they told me to head straight back to the hospital to say our goodbyes."

Alun said the family were completely devastated by the loss.

"It actually felt like someone had reached in and grabbed my heart. I wouldn't wish that feeling on anyone.

"Considering all that she went through she was always such a happy child."

Towards the end of Elis' life the family were supported by children's hospice Ty Hafan based in Sully, Vale of Glamorgan.

Three members of staff describe what it's like working at Ty Hafan:

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They said the centre was vital in helping the family out with respite care, allowing them to focus on Rhydian and Yvie.

"It was such a struggle trying to do anything with all the children together," he said.

"Just going to the shops was a military operation because of the amount of kit we had to take with us for Elis.

"But Ty Hafan helped us so much. The ease that Elis felt in the hospice was plain to see and that automatically made me feel relief.

"You could see that the nurses cared for all the children like their own. Elis absolutely loved the sensory room at the hospice. Her eyes just lit up whenever she could use it. Seeing her enjoying all the lights and bubbles, it was perfect.

"And we ended up making loads of friends there too. There was opportunities for us to talk to other parents who were in the same position.

"It put us at ease to know we weren't the only ones out there struggling."

The family have continued to support Ty Hafan since Elis' death and have raised an incredible £11,000 so far.

They recently presented the hospice with a "cuddle blanket", a piece of equipment which allows parents to hold their babies for longer after they have passed away.

Alun said he will spend Father's Day watching his daughter in a rugby tournament, followed by a family meal. But he admits Elis will be firmly in his thoughts throughout the day.

"Every day is hard. Every day you put a mask on and put a brave face on everything.

"I still haven't come to terms with it, and I don't know if I will ever come to terms with it."

Now in its 20th year of care, funds raised for Ty Hafan this summer will go towards continuing and improving the charity’s bereavement service for families.

For more information about Ty Hafan’s summer appeal, and to watch the full video featuring Alun Williams, visit www.tyhafan.org/elis