The parents of a two-year-old Leicester boy who has spent half of his life in hospital are backing a vital charity appeal. Kian Rughani has two rare chromosome conditions which affect his development and quality of life. His parents, Punika and Keval, face complete uncertainty over what the future holds for their young son.
The family are urging the community to support the Summer Appeal for Rainbows Hospice for Children and Young People, which supported them through their darkest hours. Funds raised will help Rainbows deliver holistic, expert care to babies, children, young people, and their families during times of uncertainty, ensuring every child receives coordinated, specialist input alongside their wider medical team.
Early diagnosis and hospital support
Diagnosed at an early stage, Kian’s family was supported directly by a clinical nurse specialist and a family support worker from Rainbows while still in hospital. The team worked alongside the NHS to help the family live as fully as possible from the moment of diagnosis to the present day.
Punika recalled: “Kian was born seven weeks early and had to be resuscitated. Doctors told us we needed to have a serious conversation about what the future looked like. We needed to prepare that we may never take him home. Or if he did go home, it would be for palliative care. There was a big question mark over everything.”
A shocking turn after five months
After almost five months in hospital, Punika and Keval thought they would finally take their baby home when a sleep study revealed he had sleep apnoea and required a tracheostomy. Punika said: “That was a shock for us and felt really scary. We were told he wouldn’t be able to go to the beach, swim or fly.
“I know all those things aren’t true now, but at the time that is what we believed. Actually, the tracheostomy saved his life and made it a better quality; it is part of who he is, and it makes him stronger.”
First bath and outdoor walks
Reflecting on the support received from the hospice team, she continued: “Rainbows got involved very early on and really did make us see the light at the end of the tunnel on many occasions. They gave us so many experiences that we thought we couldn’t do.
“The Clinical Nurse Specialist worked with the medical team so we could give him his first bath and to allow us to take him for a walk. Things like that were massive for us. She made us realise that yes, he had these issues going on but he was still a normal baby.”
Bringing joy during hospital stay
The charity went above and beyond to bring joy to the family during their prolonged stay in hospital. Punika added: “For us, we wanted swimming to be a big part of Kian’s life. The Rainbows team arranged for a paddling pool to be brought into the room the night before his tracheostomy. It was the nicest thing.
“And after the operation, they helped to organise a day at Rainbows Hospice. He was 10 months old and we still hadn’t left the hospital. To take him out in the car, somewhere else, for a whole day, was amazing. He got to experience things, and it was so lovely to do something normal.
“We were also visited by the Rainbows Complementary Therapist and the Music Therapist. It was great for Kian. He loves music and I think that is because of Rainbows. We were just so grateful to everyone at Rainbows as they gave us something to look forward to and made us see there was hope.
“We don’t know what Kian’s life expectancy is and life is always going to be a challenge but to know this support is out there from Rainbows, it is such a comfort blanket.”
To support Rainbows Summer Appeal, visit rainbows.co.uk/appeal.
