Arthur Mullis: Parents speak of grief after two-year-old's death and the solace Hope House provided

Today, his family open up about the worst moment of their lives – and how they are determined that Arthur’s legacy is one of hope for other families.

Arthur is the face of a new campaign to support Hope House children’s respite hospice which brings incomparable support to life limited children and their families.

The #arthursstory campaign will see powerful messages in and around the county, at a number of different events – and sometimes on the side of buses as well.

Hope House patron Shirley Tart shares the heartbreaking story of a family and their loss, and how the hospice worked to give them solace at the worst time.

They were at the place of comfort, even hope. A place where Arthur never visited yet where today, one still grieving family finds the sort of solace they could never have imagined after their beloved little boy died. That place is Hope House.

The children’s respite hospice brings incomparable support to life limited children and their families. But for Nick and Alison Mullis that discovery only came after they had faced the worst moment of their lives.

Arthur, their beloved son, had quite suddenly lost his battle. After a rocky start, being baptised at two days old, and months on and off when he seemed to be winning his fight for life, his distraught family met the worst moment of their lives.

Arthur was just two years old and had conquered so much in that short and precious time, but now, for his broken-hearted family, the gap was like facing infinity. Too enormous to grasp.

Nick remembers those moments as he recalls: “I said to Alison ‘he fought so hard and he wants to rest now. He just wants to sleep’.”

Arthur died in 2014 but the memories remain vivid and real.

And this week, we saw bravery in action as the couple led an evening of appeal in Arthur’s name. Because only after they lost their little boy, did they truly find Hope House.

Alison said: “We belong to a theatre club which has raised money for the children’s hospice for ages.

“But we didn’t really know anything very much about it. After Arthur died, we just didn’t know what to do. What do you do?”

In a miracle moment, the family was pointed towards Hope House and its Snowflake Suite – there for when little ones die and giving families the chance to be with them for as long as they want.

And any doubts which Alison and Nick may have had were dispelled like the sun after storms as the children’s hospice story unfolded for them at their moment of greatest need.

The couple reflect on touching little moments but ones which made so much difference.

For instance, Nick says with a gentle reflection: “When Arthur was still in the hospital, I tried to hold his hand but it had stiffened up. When we went to the Snowflake Room at Hope House, I could hold his hand then, it was so soft.”

I defy you not to shed a tear at the thought of this loving young father, desperately wanting to keep that precious contact with his boy as long as possible.

Thanks to Hope House, he could. And it is thanks to the public, that the hospice and its Snowflake room are there in the first place.

I know as well as anybody the commitment and support from so many local people for nearly 30 years.

I have been a Hope House patron since the beginning and wrote the Coming Home book telling the story of the hospice’s first 10 years.

And I have also talked to countless families who face life with a terminally ill child which changes not just the present but also the future.

The special love they share shines through the darkness of the conditions from which the little ones suffer and the pain the whole family feels.

We need only read the little leaflets created by each member of Arthur’s family with mum, dad, big sisters Mia and Katie, to see the effect that losing this precious child was having on the family.

Hope House needs to be there for every child, every parent, every brother and sister, not to forget each grandparent mourning for their own children and the pain they, in turn, feel. Hope House and its sister hospice Ty Gobaith at Conway find unlimited love but also need us to give love back by supporting them for the sake of the children and their families.

I know very well the financial cost of not only creating the service but of maintaining it as well, and simply keeping the doors open.

And as the service has expanded down the years, so it offers incomparable bereavement help once a child his died.

This is where families like Nick and Alison have found such love and, yes, healing.

And it is inconceivable to think that our haven of help and hope should not be there, not be available to those who need it most.

Yet even at its best, as three local families every week face the devastation of losing their child, the dilemma is that at the moment Hope House can only afford to help one of them.

Director of fundraising and marketing, Simi Epstein feels this keenly and says: “We need £6.3 million each year to run the service and even that needs to be increased and eventually we shall need an extra £4 million a year so that we can reach everyone who needs us. Yet on each January 2 when we come back to the hospice, our account is at zero. The first £10 that comes in is the beginning of the year’s money-raising again!”

Their finances are scrupulously managed with a weighty 86p from every one pound going directly into the care of children and the invaluable services they offer at the worst time in anyone’s life.

The Mullis family know only too well what this means.

In the nicest possible way, an ordinary loving family with a powerful testament to the help they have, and still are, receiving.

Life saving really, according to Nick. He said: “Without Hope House I would have torn myself apart. I just wanted to be with Arthur. It would have been so easy to just give up.”

Nick is not the first person either to be offered counselling and feel that no-one can actually help him in the turmoil of loss.

Hope House could and still does provide that help.

And as everyone agrees that “there are no words to express how utterly devastating it is to face life without the child you love,” Hope House makes the promise that it will do whatever it takes to keep a family’s life going until they are ready to live it again.

In this family that means being there, for Nick, for Alison and daughters by a previous marriage Mia and Katie, little Althea born exactly four weeks after Arthur died and now, one-year-old George, who was happily marching about at our meeting.

People can donate by visiting the website at hopehouse.org.uk/donate.