Watching Ronnie improve every day has brought real hope to our family. Ronnie and his mum Kim 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 COVID19.

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

Mum Kim said:

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

Our hospice care staff gave 110% to help Ronnie achieve his health goals. Staff worked 1:1 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. 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!"

Ronnie is doing so well. He reached all his targets that we set weekly with advice and help from his hospital team at the Evelina, whom we have built great relationships with. 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."

Having Ronnie and Kim at the hospice was a privilege for all staff. Watching Ronnie improve every day brought real hope too. 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. We would like to thank our NHS colleagues at the Evelina hospital for all their support with getting Ronnie home.”