Rafferty’s story: Support through the Kentown Programme

“We were giddy with excitement, laughing and being playful with the medical staff. We were about to have our third baby. Our boy was delivered and the change in mood was immediate. A ‘crash call’ was made and everything changed.”

This is Rafferty’s story, told by his dad Barney…

In October 2023, Barney and his wife Harvie were expecting their third child: “We were excited, expectant parents, with our list of names ready. In reality, the birth could not have been more contrasting.” Their son Rafferty appeared with severe limb deformities and required resuscitation. “Despite the quite excellent neonatal care, it took some time to establish a diagnosis, one of ‘Severe Amyoplasia’ – a rare underdevelopment of muscle tissue. You never think you’re going to be that statistic; these things always happen to somebody else. But it happened to us that day and then what can you do? You’re faced with being thrown into a world that’s incredibly intimidating.”

The family spent five weeks in their local hospital before being moved to Alder Hey Children’s Hospital, where they stayed for two further months. They came home in January 2024: “We live on a small-holding in a remote part of the Yorkshire Dales, with little family support. To some embarrassment, we became reliant on local friends to help with childcare of our other children. We were both exceptionally busy: trying to keep pace with medical teams and meet Rafferty’s complex needs, whilst also managing our own family and our work.”

Rafferty is unable to move any of his four limbs, relies on a ventilator at night and is fed through a tube into his stomach: “It is accurate to say that this period has been the hardest of our lives. We have been trying to look after our two other children while coming to terms with Rafferty’s lifelong and significant disability. We have survived by being as positive as we can and recognising our good fortune in relation to others – despite our situation. The very best thing about this whole process is that we genuinely feel we have seen the very best in humanity. From friends, neighbours and charities, to even complete strangers, people’s kindness has been overwhelming.”

The family was referred to the Kentown Children’s Palliative Care Programme, a community-focused children’s palliative care initiative in North West England covering Lancashire and South Cumbria. This collaborative programme funded by the Kentown Wizard Foundation also comprises Together for Short Lives Family Service Coordinators,  Rainbow Trust Children’s Charity Family Support Workers and Specialist Children’s Palliative Care Nurses from five NHS Trusts. All bringing together three key elements: Nursing Care, Social Care and Information and Awareness.

Barney was put in touch with Ben, one of Together for Short Lives’ Kentown Co-ordinators. When Rafferty was discharged from hospital and sent home, Ben was able to arrange a free delivery of groceries.

“Not only had our incomes been drastically affected, but we had so little time to do basic tasks like food shopping. For someone to organise and fund such a thing was incredibly moving.”

Ben was also able to arrange for the family to access a financial grant to support them while Barney was on leave from work: “That was one of the single best things to happen to us around that time, our costs of travel alone had quadrupled and I couldn’t believe that we could access charitable funds without extensive form filling. I cannot accurately convey in words the difference that made to us at that time.”

In December, the family will enjoy a trip to Center Parcs, thanks to its partnership with Together for Short Lives: “When in our position, you just crave normality and to be able to go on holiday without the financial implications is essentially magic!”

Katie, one of the Kentown Children’s Palliative Care Community Nurse Specialists has also supported the family to come to terms with the recent diagnosis: “She was a terrific support just before Rafferty was discharged and continues to be to this day. It’s nice to know she is there if we need her.”

The family has also had several visits from Rainbow Trust Family Support Workers: “We met one of the managers and a Family Support Worker and had about five visits, to support Rafferty’s brother, Wallace and sister, Dilys. They were both exceptionally kind.”