Rainbows helps children like Preston

Six-year-old Preston has a life-threatening heart condition but he doesn’t let that stop him from running around, playing and enjoying life.

Preston Shumba, of Leicestershire, and his family have benefited from our care. They now want to raise awareness of our charity and encourage people to support us by visiting the hospice on Open Day on Saturday. Preston was born six weeks premature with a complex congenital heart condition. He was immediately taken from Leicester General Infirmary to Glenfield Hospital in an ambulance.

“It was very scary, I didn’t even get to hold my baby,” said mum Julia. “I couldn’t go to him until the next day and he was connected to wires and had a mask on. I was able to hold his hand through the incubator and it was just heart-breaking.”

Preston spent the first year of his life in hospital and underwent surgery to widen his heart’s valves when he was just 10 days old. Since then, he has had two further operations on his heart. He has also had a tracheostomy tube fitted which is connected to a ventilator that he depends on. Preston’s health began to stabilise but without warning, at the age of three, he began bleeding from his tracheostomy. He was taken straight to hospital where he suffered two cardiac arrests.

“I thought I was going to lose him, I was just so scared,” said Julia.

The bleeding continued, sometimes up to four times a day, for three years. Eventually doctors were able control the eruptions with medication. To add to his heart complications, Preston only has the use of one lung. Because of this, parents Julia and Isaac, have been told their son cannot have further surgery.

“Preston will have a shorter life, we don’t know how many years he has but we take each day as it comes,” said Julia.

“I look forward to his birthdays so we can celebrate another year and celebrate making happy memories with him. We can’t think about what might happen, we just have to take each day as it comes. “Preston brings us so much joy, he is such a happy, friendly boy. He likes to play so much but he can’t run a lot as it can affect his heart.”

Julia and Isaac, who also have a daughter Febbie (10), first visited Rainbows in 2014. Julia said: “At first, I didn’t want to go to Rainbows as I was told it was a place where children go to die. But then I learnt more about it and realised it wasn’t so we decided to give it a try. I wish we had come sooner. Rainbows is excellent. It is a lovely, happy place. Preston and Febbie both love it. We all stay at Rainbows as I can’t be too far away from Preston and it is like a holiday for us. Preston is safe at Rainbows and he gets to do things that he normally can’t, like swimming in the hydrotherapy pool.”

Febbie is also supported through our Sibling Support scheme. She added: “I really love my brother and when Preston first came home from hospital, it made me really happy and I kept on hugging him. Now he goes to Rainbows and it is a great place for children who aren’t very well to get better. I get to go on the sibling trips and have sleep overs and go to theme parks and I also get to spend more time with my mummy when Preston is being looked after.”

On September 17, we will open our doors to the community, a unique opportunity to look around the East Midlands only hospice for children and young people. Visitors can take a tour of the hospice viewing facilities such as the Hydrotherapy Pool, Music Room, Multi-sensory Room, Arts and Craft Room and Soft Play. Members of our care team will also be on hand to give detailed information on the therapeutic treatments each room is used for.

Andrew Ball, Director of Income Generation at Rainbows, said “Open Day is a fantastic opportunity for people to come along to Rainbows and see the work that is carried out at the hospice. We hope that visitors to Rainbows will be inspired by the work we do by seeing first-hand how supporters make such a difference to so many families like Preston’s.”

Visitors are welcome to arrive at Rainbows on Lark Rise, Loughborough, LE11 2HS at any time between 10.30am and 3pm. For more information, call 01509 638000 or visit www.rainbows.co.uk.