FOR Children’s Hospice Week (Monday 21 June to Sunday 27 June) Tŷ Hafan and Tŷ Gobaith will be supporting more than 430 children with a life-limiting condition and their families across Wales.
The two charities are joining forces to use Children’s Hospice Week to acknowledge the immense resilience and bravery of the children and families they support, people for whom everyday living often presents multiple and complex challenges, challenges made even harder by the pandemic.
Sophie and Sean were just 22 when their son Ollie was diagnosed with the ultra-rare MOSAIC Syndrome, and Tŷ Hafan has been a lifeline for the whole family.
“Ollie is our second child, a baby brother for Summer,” said Sophie.
“He had to be resuscitated after he was born but after that he was sent to normal ward.
“He had got a sacral dimple on bottom of his spine and when I asked about this, one of the junior doctors said that Ollie had ‘unusual features’ – wide-set eyes and low set ears but the other doctors dismissed her.
“He had difficulty feeding from the start. Then he failed his hearing test. Another junior doctor noticed that Ollie was not making eye contact and suggested further tests but was also overridden.
“All in all, it was four months between his birth and Ollie being admitted to hospital. At the Heath in Cardiff and had a nasal gastric tube put down him for the first time and he fed. Bless him, it was the first time I’d ever seen him content after that feed.
“He was then admitted to hospital and they did loads of check on him. The doctors told us that they had seen all these features, but individually, not together.”
Eventually Ollie was diagnosed with MOSAIC Syndrome.
“We were sent away with Google printout about the condition after a 10 minute appointment,” she added.
“And there were no recommendations as to where to go for further support.”
It wasn’t until Ollie was 18-months-old that the family had their first experience of Tŷ Hafan.
“I had been afraid of what it was going to be like, but it was lovely, not clinical at all.
“Everyone’s happy and running around trying to give the kids the best time.”
Tŷ Hafan is not just there for children with a life-limiting condition, but for their families too.
“I got a huge amount of support from the staff at Tŷ Hafan when my sister, Emma passed away three years ago, from kidney failure,” added Sophie. “She was only 35 and we were very close.”
And the autumn and winter of 2020 and early 2021 was a particularly challenging time for Sophie. A gruelling stay in hospital for Ollie in Sept 2020 was followed a few weeks later by the death of Sophie’s much loved Bampy Sid of terminal cancer.
Then the very next day after his funeral Sophie lost her beloved Nan Diane, of Covid. And on top of all this, Sophie caught Covid herself and had to isolate in one room of the house, absolutely terrified she was going to make Ollie seriously ill, or worse.
“I was so scared,” she said. “At the start of the pandemic, the GP had phoned us and told us that if Ollie went into hospital he would not get a ventilator.
“It was horrendous and even though later on in the pandemic more ventilators became available, that stuck with me.
“Ollie first stayed Tŷ Hafan in September 2020 after he came out of hospital and has been a few times since. And it is fantastic.
“I stayed with him in Tŷ Hafan a few times, but I live so close, I don’t want to use facilities if I don’t need to because there are lots of other families out there who need this kind of support too.
“But it’s not just the respite stays. If I’m having a really a bad day, I know that someone at Tŷ Hafan will have the time to just sit and listen to me.
“Me and Sean don’t talk about what we’re going through because we’re both going through it and we don’t dwell on it, we just try to get on with things. So for us, Tŷ Hafan is absolutely brilliant, a total lifeline.
“Plus Summer has had counselling. She was so upset when my sister passed away.
“It was her first experience of death. After that she was waking up in middle of night, crying, running into Ollie’s room to make sure that he was still breathing.
“Now Summer has just finished another bout of counselling. She’s been stuck in throughout the pandemic.
“And the counselling has been so, so good for her because now she’s asking questions and taking more in about Ollie.
“I’ve bought her a Worry Monster – if things are bothering her then she writes things down, puts them in the worry monster, then at night I go into her room and empty it.
“Now, thanks to the counselling she has had from Tŷ Hafan, Summer feels able to talk about what’s going on more. And I wanted this – I wanted her to be able to to get it all out in the open. Its Ok to cry, it’s Ok to be upset.
“Already, Ollie has been emergency transferred there to Tŷ Hafan two or three times for end-of-life care.
“Counselling has definitely helped her to deal with this, and, because for the past year or so due to shielding, she has had to live under the tightest of restrictions.
“Summer now back at Cogan Primary School and things are definitely better for her.
“If we did not have support from Tŷ Hafan – we would have no respite at all. The hydrotherapy pool is amazing, plus the socialising with other children and families.
“The nurses there have known Ollie all his life and they are amazing with him. Plus through the Super Sibs group, Summer gets to speak to children in same position as her and she absolutely loves that. Kelly Jo, in particular, is amazing.
“During lockdown she was doing video calls once or twice a week, and Summer so looked forward to speaking with Kelly Jo.
“Tŷ Hafan has been there for us all the way. They have even sent us food parcels at the start of the first lockdown and phone us up regularly to check how we are.
“One time, I was almost overwhelmed and I went to Tŷ Hafan. One of the nurses, Adrian had just finished working but it didn’t matter. He just sat with me and listened. That gave me enough to get up and go on.”
Maria Timon Samra, Chief Executive of Tŷ Hafan, said: “Families of a child with a life-limiting condition are already challenged in terms of how they live their everyday lives. They are ordinary people, living extraordinary lives.
“While so very many of us may have had to juggle home-working and home-schooling amid concerns about the impact of Covid on our families and loved ones, this is really put into perspective when we think of the parents of our hospice children.
“Over the past year, they have also had to be primary care givers for their life-limited child 24/7, without the usual access to support networks. Their usual opportunities for relief have been cut off due to the various restrictions and shielding requirements.
“Our hospices, which our families have described as their ‘lifeline’ have stayed open to provide crisis care and end of life support throughout the pandemic and are carefully and safely welcoming more families back.
Andy Goldsmith, Chief Executive of Tŷ Gobaith, added: “We decided to use the occasion of Children’s Hospice Week to draw attention to these remarkable children and their families.
“To acknowledge just how extraordinary they are, all day, every day often with very little support, and how we, the children’s hospices in Wales are calling on the Welsh Government to provide families with the support they deserve and often desperately need, even more so since March 2020 when all of our worlds turned upside down.
“We also want to use this occasion to thank the thousands of individuals, clubs and societies, businesses and organisations that have supported Tŷ Hafan and Tŷ Gobaith so generously throughout some of our most difficult times.
“We thank them from the bottom of our hearts. We are always delighted when someone would like to help us in some way and we are always open to new offers and ideas.”