Dainton's Story

“How are you managing to get out and about?” asked the family support worker from Child Services.

“I’m not!” said Billie-Jo, 25-year-old, single mum of three from Sunderland.

For many parents the school holidays can be a real struggle, but getting out and about can help to entertain the kids and boost everyone’s wellbeing.

Back in summer 2022, Billie-Jo was juggling a 1-year-old, a 3-year-old and 5-year-old, Dainton. However, for Billie-Jo, it was even more challenging than for most as her eldest son, Dainton, now 6, has a rare genetic condition that has led to a range of life-limiting health issues.

Billie-Jo explained:

“Dainton was born 2 weeks early, he was only 5lb and 2oz – but he seemed absolutely fine and I was so happy to go home with my beautiful baby boy. But when I got home, he cried all the time and I noticed his eyes couldn’t seem to focus.”

Dainton was given an MRI scan and they found that he was having small bleeds on the brain. At 6 months old, Dainton began to have seizures and his health “spiralled”.

Now, Dainton is blind, he can’t talk or walk, and he has epilepsy with regular seizures. He is in a wheelchair and is fed via a feeding tube due to difficulties chewing and swallowing.

So, even with the support of her mum and sister, getting through the day with Dainton and his siblings is tough for Billie-Jo, let alone getting the kids out the house during the summer holidays.

The family support worker who visited the family in 2022, suggested that they might all benefit from some help from us here at St Oswald’s Hospice.

Although the hospice is in Gosforth, we support families from across the North-East, including Sunderland – so our Children and Young Adults Service, where we provide short breaks for babies, children and young adults living with life-limiting conditions, was the perfect place to care for Dainton.

However, mum, Billie-Jo wasn’t so sure:

“I said no to respite care for Dainton at first as we’d never been apart before.”

However, when she heard more about the service, the expert care and the activities that Dainton could get involved in, she agreed to visit and has never looked back:

“As soon as we came for a look around, we felt welcome and it felt right.”

Soon after the visit, Billie-Jo brought Dainton for his first monthly short break at the Children and Young Adults Service:

“It took him a little while to settle in – but he loved it!”

She continued:

“I find it hard to trust anyone with Dainton, but quickly felt that I could trust the team at St Oswald’s Hospice.”

This trust was built on, when Dainton became poorly during a stay in August 2022, Billie-Jo appreciated the way the hospice cared for her son and supported her through a difficult time:

“When Dainton needed to go in to the RVI hospital, the nurses at the hospice supported me and kept in touch the whole time.”

Dainton surfing
Dainton with SOH staff

Now, Dainton looks forward to his monthly breaks at St Oswald’s Hospice where he enjoys fun activities and has built relationships with the care team

Billie-Jo said:

“He loves doing fun things like surfing and playing in the sensory room. And he loves the girls who take care of him!”

Meanwhile, Billie-Jo, enjoys having some time to spend with her other two children each month, getting them out and about and not worrying about Dainton, as she knows he’s happy and safe.

When asked what she’d say to other parents who may be considering hospice care for their child, Billie-Jo said:

“Try it. The hospice is different to what you’d expect – I’d never go back to not having it for Dainton now. It’s such a special place.”

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