Dad whose daughter is 16 months old reveals how he's doing for Father's Day

A father whose daughter died of a rare condition at the age of 16 months revealed how he was coping each day with Father's Day.

For many, it 's a special celebration, but for Alun Williams, it reminds him of innumerable painful memories that he knows he will stay with him until he' s up to date. at the end of his days.

He said it would not get any easier, but he just had to learn how to handle the loss of his beautiful daughter, Elis.

Alun, who has two other children, said he would spend Father's Day watching his daughter in a rugby tournament, followed by a family meal.

But he admits that Elis will be firmly in his thoughts throughout the day.

"Every day is difficult, every day you put a mask and a brave face on everyone," said 45-year-old Wales Online.

"I still have not accepted it, and I do not know if I will ever be able to accept it."

He added: "Nothing gets easier, you just learn how to deal with it.

"Some things will still provoke me now, where I'm just going to have a little thought, a memory will arrive or I'll hear a piece of music and the valves will open."

Elis died in 2010 from an affection that caused her heart, kidney, sight and hearing problems.

The doctors had warned Alun and his wife Vikki, a very pregnant woman, that Elis would be born with a range of serious health problems that could potentially shorten life.

A few weeks after her birth, a Charge Syndrome, a genetic disorder affecting one in 10,000 children every year, was diagnosed.

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

"We were facing a parent's worst nightmare: the idea that we were going to survive our child," said Alun of St Athan's Vale of Glamorgan.

"We had two other kids who were doing fine without any problems, trying to find a way to fix the problem and stay healthy at the same time.

Alun said that he was really struggling to explain what he felt for his family and friends – and that he would often collapse in private.

"When you hear about the diagnosis for the first time, a whole host of things come to mind, you think," could I have done something different? Is it me? Is this something that my wife did? Is this something that just happened? "

"The first thing you want to do is make sure everything is fine for the rest of the family, you want to protect them and protect them from everything that's going on around them.

"I got closer to everyone, I was trying to be strong for the family, then to leave and collapse myself, away from everyone.

"Nobody could see that I was in tears all the time."

Elis spent the first 100 days at the Wales University Hospital in Cardiff before being operated on at the Bristol Children's Hospital to correct a cardiac anomaly.

"The procedure took place a few days before Christmas and we finally spent part of the day at the Bristol Hospital, it was really a Christmas to forget."

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

"There have been many times of crisis because of what Elis had been in. Every week was a trip to the hospital," he added.

"Whenever she came into the house, there was a crazy panic about who would accompany her and who would stay with the other kids.

"It affected work, family life, general well-being and sleep."

Elis, who was extremely susceptible to infection, took a worrying turn after getting rid of her adenoids – small pieces of tissue at the back of the nose -.

"The doctors said the Elis temperature was one of the highest ever encountered, so they put it under ventilation," added Alun.

"I went to see my other children, but when I arrived, the house phone rang.

"The doctors said that they could not do much to help him.His statistics were in free fall and they told me to go back to the hospital to say goodbye. . "

Alun said the family was completely devastated by this loss.

"I had the impression that someone had seized my heart, I would not wish that feeling to anyone."

"Considering all that she has lived, she has always been such a happy child."

Towards the end of Elis life, the family was supported by the Ty Hafan Children's Hospice based in Sully, in the Glamorgan Valley.

They said the center was essential to helping the family with respite care, allowing them to focus on Rhydian and Yvie.

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

"Going to the shops was a military operation because of the amount of material we had to take with us to Elis.

"But Ty Hafan helped us so much." The ease that Élis felt in the hospital was obvious and it automatically made me feel a relief.

"You could see that the nurses took care of all the children like theirs.

"Elis loved the hospital's sensory room, her eyes lit up every time she could use it, and seeing her enjoy all the lights and bubbles was perfect.

"And we ended up making a lot of friends here – we had the opportunity to talk to other parents who were in the same situation.

"It made us comfortable knowing that we were not the only ones fighting."

The family has continued to support Ty Hafan since Elis's death and has already raised an incredible £ 11,000.

They recently gave the hospice a "hug blanket", a piece of equipment that allows parents to keep their baby longer after death.

In its twentieth year of badistance, the funds raised for Ty Hafan this summer will be spent on continuing and improving the family support service in the event of death.

For more information on Ty Hafan's summer call and to view the full video featuring Alun Williams, visit www.tyhafan.org/elis.