Ahead of Children’s Hospice Week, we caught up with them again last month to see how their lives have progressed.
“We moved into our home in Usk just over a year ago to be near family,” says Khloe.
“Since then, pretty much all I’ve being doing is fighting: fighting for a place in school for Llewie and fighting to get continuing health care for him.
Fighting for an education
“Llewie should have started school two years ago, but Covid has had a massive impact. We had to wait for a statement to be finished because of Covid and then it was a hard fight to try to get a special needs placement named on his statement.
“So here we are. Two years on. It’s awful.
“Llewie deserves the right to an education. We tried to get a Teaching Assistant out to our house, but it was risk-assessed as ‘too risky.’ So we’ve just had to try our best ourselves at home.“Llewie is a really able-bodied boy. He can climb, he can run, he loves music, especially Ed Sheeran. He loves animals and his favourite place is Farm Park.
“I couldn’t love him any more. He is my absolute world and he has so much love to give, there is so much happiness in him.
“Communication is what we are struggling with a bit at the moment. I tend to try ‘yes’ and ‘no’ questions – he can answer quite a lot. He’ll sniff as an answer. Or he’ll take you to the fridge and tap it. I know that Llewie has got a lot to give if he is given the right tools to help him.
“But more than that, school is about teaching children life skills, communication skills and so on. It’s about enabling children like Llewie to be able to live as independently and happily as they can.
Fighting for continuing care
Khloe has also faced battles on other fronts: “I’ve also been fighting to get continuing health care for Llewie – and it’s just been confirmed that he is going to get that.
“I want to say a massive thanks to Tŷ Hafan for helping us with this. Tŷ Hafan has been instrumental in providing evidence of the level of care that he needs.
“At the moment we get one weekend a year for respite care plus a few hours of care per week from the council. This carer is an unskilled worker though and is classed as a second pair of hands.
“But we can’t find carers. When we do get a carer, I have to train them in stoma care (an opening made through the abdominal wall which connects the bowel to the surface of the abdomen), washouts and medication.
“There’s no break in any of it. It takes four months to train someone – sometimes only retaining people for a few months afterwards.
“I had sepsis not so long ago. I spent one day in hospital on oxygen, but Llewie’s care was so awful I had no option but to go home and care for him while I was still unwell myself.
“A few weeks ago, I caught Covid and had to isolate from him. After two days, the carers went sick so I had to come back in while ill with Covid. Llewie caught Covid from me – his temperature was 41 degrees.
“There’s no option for me to be ill. Which I think is the case for a lot of families. This is not fair on them.
“Tŷ Hafan provided me with detailed information on what ratio of care Llewie needs, evidenced by his stays in the hospice all year round.
“This means that now we are being provided with a skilled worker and a regular package of support to give me a break and hopefully get some sleep.
“It sounds like nothing, but it is so much better than it was.
“The reality is that we are in a crisis of care in this country. I’m really grateful to Tŷ Hafan for all the help they have given me and are giving us.”
I want to go back to work
“I lost my job because of Llewie’s disability. I had been working as a manager at Waitrose. I loved working.
“I’m 29 and I’d love to be able to work again and I know that there are so many other carers out there in similar situations.
“The cost-of-living crisis is going to hit us so hard.
“You face so many hardships when you are a carer. Carer’s allowance, for example, is a pittance.
Tŷ Hafan has helped us more than anyone
“I’m slightly more fortunate than other people because I have got funds from an ongoing legal case to draw on – but I’m at breaking point, and there are so many other people out there who don’t have that.
“I can’t wait for my stays at Tŷ Hafan. When Llewie is at Tŷ Hafan I can sleep. I can see friends. I can see my mum. Have quality time with my family. So many families out there are in the same boat, if not worse.
“Tŷ Hafan is our lifeline and has helped us the most. If I could donate £1m to Tŷ Hafan tomorrow I would. They have been that helpful.
“If you provide people that love their family members with a little bit of respite, then they can carry on doing it.
“My message for Children’s Hospice Week is: ‘Councils in Wales and beyond, please listen. There is a very real risk of families like our own saying we just can’t do this anymore. The only thing that keeps us going is unconditional love and the determination to fight for our children who don’t have a voice.”