At two-days-old, Owen Porter’s parents were told their son might not survive the ambulance ride he needed to save his life.
Thankfully he did but Owen, now aged ten, was diagnosed with a life-threatening condition that tore their world apart.
Eight years ago, his parents, Tara and Jason, discovered Rainbows Hospice for Children and Young People and said the support they have received has been invaluable.
The couple, of South Normanton, want to raise awareness of the charity and encourage people to support Rainbows and visit the hospice on its Open Day later this month.
Tara explained: ““We are very grateful to Rainbows for giving us precious family time.
“I want people to know about the good work Rainbows does to help children like Owen and families like ours and I hope that people will support them in any way they can.”
When Owen was two-days-old, he began vomiting old blood and was transferred immediately from the Royal Derby Hospital to Nottingham’s Queen’s Medical Centre, where it was uncertain if he would survive the journey. In theatre, surgeons discovered Owen’s intestines hadn’t formed properly during pregnancy. They removed 90 per cent and Owen was left with Short Bowel Syndrome, which causes malabsorption.
“Our world just fell apart,” said Tara. “I gave birth to a healthy baby and it changed so fast. Owen’s prognosis was guarded. We were told there was a very strong chance he would die and we had to take every day as it came.”
At just a week old, Owen had a perforation in his bowel and again, his parents were told to prepare for the worst. “I just didn’t know how much more we could take and how much more his tiny body could take,” added Tara. “He was just so vulnerable and I felt really, really helpless. I had to come home every night as there was nowhere to stay and I just felt so isolated from him.”
Owen was diagnosed with liver failure, he picked up numerous infections and was fitted with an intravenous feeding line. At four months old Owen suffered a cardiac arrest. “I was with him that night,” said Tara. “It is something no mother should have to see. But he bounced back. It was just a miracle really, he is so incredibly strong. Two weeks before his first birthday, Owen finally came home.”
In his first three years, Owen was constantly in hospital for operations, blood transfusions and IV antibiotics. He suffered liver failure, chronic kidney disease and was diagnosed with Cerebral Palsy. Owen was fitted with a central line in his chest to enable drugs to be administered. Tragically, he is running out of veins that are suitable for the central line. “Next time there might not be any veins to get a line in and that is very scary. I try not to think of it,” added Tara.
For Tara and Jason, who also have a 13-year-old son, Ryan, rest is impossible. Owen, who has had 28 operations, requires around the clock care and has to be tended to every two hours during the night.
“When we first visited Rainbows, it was amazing,” said Tara. “We stay there as well as Owen and I get some rest. I get to be a mum knowing the medication is taken care of. Owen loves Rainbows and he doesn’t want to come home. When we are going, we get so far along the M1 and he starts clapping and smiling. For everything he has been through, Owen is very happy and smiley. He is so strong and such a little character.”
On September 17, Rainbows will open its doors to the community, a unique opportunity to look around the East Midlands only hospice for children and young people.
Andrew Ball, director of income generation at Rainbows, said: “Open day is a fantastic opportunity for people to come along to 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 Owen’s.”
Visitors can take a tour of the hospice and members of Rainbows’ care team will also be on hand. 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.