Incredibubble fun guaranteed at Bubble Rush Derby
Thousands of people are set to take part in the Rainbows Bubble Rush event at Derby’s Markeaton Park, a multi-coloured, frothy fun-filled fundraiser for all the family organised by Rainbows Hospice for Children and Young People. We take a look at two Derbyshire children benefiting from the Loughborough-based hospice for youngsters with life-limiting conditions – and how families are supported by the charity.
Twin worries, double the love – Olivia and Oliver’s story
The beautiful little girl in the bouncer kicks and waves her arms, then chuckles right at her mother with happiness. And yet she cannot see her mummy smiling back at her lovingly. Two-year-old Olivia is blind and deaf. But she is lucky to be alive. Born more than two months premature, she was not expected to live.
Her twin brother Oliver has fared better. He comes bounding towards his mother, takes a look at his sister and runs off excitedly to find a toy. But he too has defied the odds and his energy belies that he, like his twin sister, has a serious heart and lung condition. That he is walking and talking is nothing short of a miracle. The twins have come a long way since they were born 11 weeks premature, each baby smaller than their mother’s hand.
The news that Dionne Jones was expecting – and that this time it was twins – had seemed a double delight for the Derbyshire mum. Especially following the devastation of losing her previous baby, Beth, who had been stillborn six months into the pregnancy.
“It was incredibly exciting to discover I was pregnant again, but a bit of a shock to discover it was twins,” says Dionne from Ashbourne. “To be honest, I was still grieving for the little girl I had lost.”
Yet her and her partner Gary’s happiness over the pregnancy soon turned to concern. There were worries about Dionne’s own health. Her blood pressure was sky high. But an early scan gave no indication there was anything wrong with the twins. That came at 12 weeks with the devastating news that one of the twins wasn’t getting enough oxygen – and the suggestion that twin be terminated to give its unborn sibling a better chance. The dilemma was that the procedure might result in the loss of both twins.
“The pregnancy was so stressful,” says Dionne. “Either way, there were risks. I just wanted to give both twins the best possible chance.” Doctors told her that for her babies to have the best chance of survival they needed Mum to go at least 30 weeks into the pregnancy.
But at 21 weeks she was taken into hospital. Again, her blood pressure was dangerously high and there were fears she would miscarry.
“Every day, then every week further into the pregnancy I would breathe a sigh of relief,” says Dionne, who at 27 weeks was on the high dependency ward. “I was desperate to go as long as I could,” she adds. But at 29 weeks she went into labour.
It was the start of the twins’ battle for life.
Olivia weighed just 455 grams and was, says Dionne, ‘transparent’. Her little brother was heavier at 950 grams. Both were born with chronic heart and lung conditions. But the immediate concern was for the little girl. Olivia had contracted an infection, which in her fragile condition was life-threatening.
“They didn’t think she would survive – the first 24 hours were crucial.”
But tiny Olivia was a fighter and stubbornly clung to life in intensive care, despite suffering constant seizures. And at nine weeks old Dionne arrived one day at the Birmingham Children’s Hospital to find the curtains around Olivia’s incubator closed. She’d suffered heart failure… and yet, as the medical team fought to save her life for 90 minutes, finally she stabilised.
“It was touch and go,” says Dionne, breathing deeply as she recalls that terrible time. Meanwhile, twin Oliver was also weak. His main heart valve wasn’t functioning properly following birth – a condition known as Aortic Stenosis - and doctors had already recommended surgery at Leicester’s Glenfield Hospital when he was stronger.
Yet at 12 weeks old he suffered acute heart failure, though emergency teams managed to stabilise the little boy. But doctors agreed, to give Oliver the best possible life chance they would have to operate sooner, rather than later.
“It seemed at that time I was constantly visiting hospitals, unsure of what each day might bring,” says Dionne, who also has three older boys, Joe, Kieran and Billy.
“I wouldn’t have coped without the support from my sister Stacey and mother, Karen,” she adds. “They were able to help care for my other boys during that terrible and uncertain time.”
Although Oliver survived the open heart surgery, the procedure was not successful – and had to be repeated after three weeks. The little boy, like his twin sister, clung doggedly to life. And this time, the corrective surgery seemed a success – and will not need to be repeated until he is older.
Little Olivia also needed open heart surgery to correct a palpitation of the aorta. But due to her size and the amount of fluid on her lungs, the carried out the procedure under her arms. Again, it was a risky procedure, but the little girl pulled through, despite regular cardiac arrests.
With both twins in intensive care, you might think things couldn’t get any worse. But Oliver contracted sepsis while still recovering from his surgery. A brain scan on his twin sister revealed that the little girl had most likely suffered a stroke at some point over her first 10 weeks of life. The prognosis was not good.
“Those first few months were like a rollercoaster,” says Dionne, suddenly overcome with emotion as she recalls that terrible time. “Both twins were critically ill in intensive care and still very weak. I have difficult days when I still shed a tear. And I ask ‘Why me? Why the kids?’. But then I realise little ones like Oliver and Olivia only come to those who can cope, with love and hope. Then I realise I wouldn’t change anything.”
Doctors now believe Olivia contracted meningitis, resulting in brain damage. It also means the little girl is deaf and blind, with a life expectancy of just five years.
But Dionne is not one to give up hope. “They said Oliver as not likely to walk, or talk. But look at him.” Indeed, the little boy seems like any other toddler his age and, since learning to talk ‘never seems to shut up now’, she says with a smile. Just a few weeks ago he was still being tube fed and was on oxygen.
During the last year the family was offered its first visit to Rainbows. “We came for the weekend and it was simply fantastic. We didn’t want to come home! It’s an amazing place, not just for the twins, but for all the family – and I can’t explain how grateful I am. The facilities are incredible, the Care Team wonderful. It has been a real breather for me – a chance for me to relax a little for the first time since the twins were born.”
Dionne doesn’t know what the future holds for the twins. Any illness can be life-threatening.
But she says: “Every day is different, but I know the challenges which lie ahead and I will take it as it comes. But I have great family support and I have Rainbows. And I have hope for the future.”
Derby Bubble Rush – foamy fun for all the family
Organised by Rainbows hospice, Derby Bubble Rush takes place at Markeaton Park on Saturday, 7 July, and is a 5k course of frothy fun. Along the way participants will encounter foam cannons blasting out walls of foaming multi-coloured bubbles, which are family and wheelchair friendly. Organisers hope the event will raise at least £30,000 for the charity, which supports children and young people from the city and county like Olivia and Oliver.
Victoria Brunt, Rainbows Events Coordinator, said: “The support for the event last year was amazing. But we’re hoping a record number of families will sign up to help raise money for children and young people with life-limiting illnesses – and have fun. You don’t have to run. You can walk, even dance around the course! It’s not about speed or fitness, it’s about celebration, having fun with friends and family - and raising a smile for Rainbows.”
Entry is £25 for over 16s, £7.50 for under 16s and under 3s go free.
For more information and to register, visit rainbows.co.uk/bubble or call 0800 952 1133.