My name is Rhys, a first time dad blogging about my adventures and experiences of being a parent. [email protected]

Tŷ Hafan’s Sophie is helping us to face the unthinkable

Luke King Fisher with his cousin Jasmine in hospital

A brisk walk in the fresh air is something many of us do to help cope with the ups and downs of life.

For Tŷ Hafan mums Lowis Fisher and Maria Saint Clair, simply being able to get out for a walk is only the half of it.

Because for Lowis and Maria, walking helps them to cope with facing the unthinkable loss of their beloved children and is the motivation behind them taking on this June’s Welsh 3 Peaks for Tŷ Hafan.

“I had Luke two weeks before my 17th birthday,” says Lowis. “When he was one-year-old he was diagnosed with rare conditions Scizencephaly and PMG. They thought he would be blind but he isn’t, but he does have complex medical needs and epilepsy.

“He couldn’t live a normal life and no one was sure of his life expectancy.

“Luke has had multiple operations, including scoliosis surgery. He has quadriplegic cerebral palsy. He is in a lot of pain and on daily medications and has to be tube fed. And if he’s not in his wheelchair he’s in bed.

“For the first 10 years of Luke’s life I was on my own with him with no support. It’s scary and it’s lonely being on your own with a child like Luke. It’s also confusing and difficult.

“You’ve got your child and you want to love and protect them. But you’ve also got so much more going on emotionally than your average parent. It’s almost like you don’t even have time to think.”

When Luke was 10, he and Lowis were put in touch with Tŷ Hafan.

“When he started going there – it was the first time I had anyone who could just look after him,” says Lowis, who lives in Llantwit Major. “They look after you too. They look after all the family.

“When Tŷ Hafan step in and give you some support it helps you so much. You have time to slow down, you have time to think about what you are doing and what you are facing, perhaps for the very first time. They are always there for you – you can phone them any time.

“There’s such a massive difference in your life. I’d say that in fact it’s like two different lives, before Tŷ Hafan and after Tŷ Hafan. It’s that big.”

Luke, is now 20, and a young adult. Last December he developed pneumonia and nearly died.

Even though he is no longer a child, the support from Tŷ Hafan has continued for him and for Lowis.

“Tŷ Hafan is still there for us,” says Lowis. “When Luke developed pneumonia in December I would not have coped without Sophie, Tŷ Hafan’s transition nurse. Sophie called us, she came to the hospital with us, she came to our house and she did Luke’s end of life care plan with him.

“She is the most honest person I have ever spoken to. And by being so honest she takes away the scary parts. She is an absolute angel and I don’t think I would cope without her.

“Luke’s lungs don’t work so well and we know that the next time Luke gets ill it will probably be the last time.

“Luke’s condition does not affect his capacity so it has caused him a lot of depression and anxiety and that’s made his condition even harder to handle. The mental struggle is as great as the physical struggle if not more so.

Lowis Fisher and friend Kelly Dance on a training walk

“I signed up for the Welsh 3 Peaks after Luke got pneumonia. It’s helped me so much because it’s given me something to look forward to. I want to raise money for Tŷ Hafan.

“I walk every day. It helps me to cope. But I’ve never walked up three mountains in a day. I’m really excited about it and, mentally, I need it.

“People don’t realise how much money it costs to keep the Tŷ Hafan going and provide services like Sophie provides. We are a community. Other people won’t understand it unless you live it.”

Lowis is walking with fellow Tŷ Hafan Mum, Maria Saint Clair. Maria’s brother, Sam Greenslade, had Duchenne Muscular Dystrophy, and was supported by Tŷ Hafan until he died in 2021, aged 34. Now Maria’s daughter, Emily, who also has Duchenne Muscular Dystrophy, is also supported by Tŷ Hafan.

They’re joined by Lowis’s nephew, Thomas, 19, and family friend Kelly and are walking in memory of Cai Turner, Blisse Mellens and Hallie Mai Jones, three children all supported by Tŷ Hafan who have all died in recent years.

James Davies-Hale, Head of Fundraising, says: “We so grateful to Lowri, Luke, Maria and Emily and everyone who is taking on Tŷ Hafan’s Welsh 3 Peaks.

“When a child’s life will be short no family should have to live it on their own. And of the families in Wales who live with the unimaginable reality that their child’s life will be short, a shocking 90% currently do so without the support they need.

“Sign up for the Welsh 3 Peaks and you will help us to reach every child who needs us.

“But be quick as registration closes on May 12 and we just have a few spaces left.”

This year’s event is once again generously supported by GE Aerospace which has been Tŷ Hafan’s corporate partner for the Welsh 3 Peaks ever since it started 26 years ago and has raised more than £800,000 for children with life-shortening conditions and their families in Wales.

You can sponsor Lowis, Maria, Thomas and Kelly here.