Ty Hafan: Unique bond of mums who met at children's hospice

Being the mother of a child with a life-shortening condition can be an isolating experience.

Finding friends who understand what you are going through is often hard.

But a group of mothers who met through children's hospice Ty Hafan in Sully, Vale of Glamorgan, said the friendship and support they get from one another is second-to-none.

"No-one can really understand what you're going through," said Alex Forbes, whose 10-year-old Felix has a life-limiting neurological condition.

"It can be really, really lonely and there's been some really sad times during the years but when I'm with the other mums it just feels normal."

Alex, from Llantwit Major, Vale of Glamorgan, is part of a group of eight mums who will take on the Welsh Three Peaks Challenge - climbing Yr Wyddfa - also known as Snowdon, Cader Idris and Pen Y Fan all in one day to raise money for the hospice on 7 May.

She said the bond between them had deepened in recent months after spending many hours walking together training for the challenge.

Some of the mums are caring for their child with a life-shortening condition, others have lost a child but continue to be supported by the hospice.

When Alex's eldest child Felix was just 13 weeks old they were told he had a rare neurological condition called lissencephaly miller-dieker and would not live past infancy.

"Felix is completely dependent on us 24/7," said Alex, 42.

"There's everything from suctioning him, dealing with daily seizures, giving emergency medication, changing him, feeding him, it's basically like caring for a new born."

She said spending time with other mums who understand what she is going through had felt like respite.

"Having that bond with them - and we're all on different parts of our journey - it's something which you can't get from anybody else so I feel quite honoured that I'm part of this group," she said.

"There's nobody that understands like another Ty Hafan mum," said mum-of-five Marie Jones, 47 from Bridgend.

"Even though our stories are different our experiences are so similar, our thoughts and our feelings are very, very similar and that support is just well second-to-none really."

Marie's youngest, Alfie, 12, is unable to walk or talk, is deaf, partially sighted and needs someone to feed him.

His genetic condition is so rare it doesn't have a name and doctors are unable to predict what the future holds for him.

"In the beginning that was really difficult but over the years it just becomes normal," said Marie.

"We stopped worrying about what the future held a long time ago, there's no point in worrying about something you don't know."

She said having Alfie had given her a huge shift in perspective.

"Before Alfie, myself and my husband were both working full-time, life just passed us by... and when Alfie was born everything stopped and slowed down and when you slow down you realise how much of life you were missing before, it meant we appreciated everything and all the children a lot more."

Stacey Carr's son Kiegan died when he was three-and-a-half.

Kiegan had an unsafe swallow, was profoundly deaf, had impaired vision and dystonic cerebral palsy.

Her friendship with Marie began when both their children were on the ward at the hospice.

"You form a bond with the other mums," said Stacey.

"Even though I've lost Kiegan it is still a life I'm part of, it is never going to go away."

More than six years on, Stacey's other six children are being supported by Ty Hafan's sibling bereavement service.

"When we lost Kiegan… everyone else faded out but Ty Hafan were there and are still with us now," said the 34-year-old from Pyle in Bridgend.

"They've done memory boxes, they go out on trips, they do days out… it's just an amazing service as there's not much out there for children who've lost a sibling."

Stacey said she and another mum shared a particularly special moment during a recent walk up Cader Idris.

"We were having a conversation because we've had the same experience, we both lost our child, then at the bottom then we saw two little robins which put a smile on our faces, it was nice to know he's still there really," she said.

Ty Hafan supports about 274 children with life-shortening conditions and their families each year.

It costs about £5.2m every year to provide the hospice's care services and about 80% of this is met by donations from the public through fundraising, legacies and its commercial activities such as its lottery and shops.

Jenna Lewis, a director at Ty Hafan, said: "These families are having to deal with challenges on a daily basis that most of us couldn't possibly imagine, looking after a child who has a life limiting condition and whose life is going to be short.

"The parents we support often tell us that it's that network of people who are going through the same thing as them and understand the challenges they're facing on a daily basis is a big thing that really helps them."

The sheer amount of reliance and emotional strength in the group has left Alex feeling very optimistic about the challenge ahead.

"We called it Mums v Mountains because it symbolises what we do on a daily basis. It is like climbing a mountain every day - it is tough emotionally and physically," she said.

"Their strength is phenomenal and I know that's going to carry us all through."