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Ronnie’s story: Watching Ronnie improve every day has brought real hope

Haven House hospice has been going above and beyond to support seriously ill children and families and take the pressure of the NHS in the Coronavirus pandemic. They were there to support Ronnie and his mum Kim when arrived at Haven House in mid-April from the paediatric intensive care unit at Evelina Children’s Hospital.

Ronnie has a rare condition called PRPS1, which leads to muscle weakness and kidney issues. His condition requires long-term ventilation to support his breathing. Ronnie John had been in hospital since February and had experienced quite a turbulent time following several failed attempts to wean him off his ventilator.

By transferring Ronnie to Haven House, this not only allowed a much-needed bed in an intensive care unit to become available for another sick child – it also provided a safe haven for Ronnie from the hospital environment where Kim was worried, he may be at risk of contracting COVID-19.

On arrival at Haven House Ronnie needed his face mask ventilator for 18 hours a day. Through virtual training with the team at the Evelina, our team, who are specialised in caring for children on ventilation, the hospice team were able to familiarise themselves with the ventilator Ronnie uses.

“Being in hospital during the COVID-19 pandemic was an extremely worrying time for us,” says Ronnie’s Mum, Kim. “Ronnie’s condition means he has a very weakened immune system and I didn’t feel that him being on a hospital ward was the right place for him to make his recovery.”

Being in hospital during the COVID-19 pandemic was an extremely worrying time for us

Ronnie's Mum Kim

“I spoke to our hospital consultant about my concerns and it was then that a hospice was suggested. I was relieved and was looking forward to going to Haven House – even though I wasn’t sure what to expect. The Haven House team are so friendly, and Ronnie absolutely loves all the staff. We settled in easily and we felt comfortable. They looked after us so well” adds Kim.

The Haven House hospice care staff gave 110% to help Ronnie achieve his health goals. Staff worked one to one with Ronnie and Kim to wean him off the ventilator in set increments so that when he was ready to go home, he was back to night-time ventilation only. Our wonderful physiotherapist Donna supported Ronnie three times a week to provide physiotherapy sessions making him stronger.

Haven House senior nurse Aisling Kilbane said:

“When Ronnie came to the hospice, he was quite weak, recovering from a very serious bout of illness,” says Haven House senior nurse Aisling Kilbane. “However, he thrived in the freedom and varied environment of the hospice which allowed him to explore the grounds and use play to exercise. He was able to use a standing frame to have lots of fun with our play team and even celebrated his 4th birthday with us here!

Having Ronnie and Kim at the hospice was a privilege for all staff. Watching Ronnie improve every day brought real hope too.

Aisling Kilbane, Haven House Senior Nurse

“Ronnie is doing so well, and he has reached all his targets. Mum was able to stay with us at the hospice too, an expert parent that we worked hand in hand with us to ensure we all provided Ronnie with the best plan to move forward. This family is a wonderful example of how persistent effort, open communication and strong relationships can achieve what seems like the impossible.

“And we are so privileged to be part of that. Having Ronnie and Kim at the hospice was a privilege for all staff. Watching Ronnie improve every day brought real hope too. We would like to thank our NHS colleagues at the Evelina hospital for all their support with getting Ronnie home.

Family stories