Sophie's story

Sophie Cooper suffers from several life-limiting conditions, but it hasn’t stopped her from flying in a plane, zip wiring and racing in a power boat, with her family determined to allow her to make the most of every moment…

Sophie and her twin sister, Erica, were extremely premature. Born four months early, their parents were told it was unlikely they would survive into the next day. But they defied the odds.

Sophie has numerous conditions including Cerebral Palsy, chronic lung disease and Scoliosis – a curvature of the spine. The three conditions combined are very serious and parents Leanne and Craig Cooper never escape the knowledge their daughter could be taken from them at any time. But that has not dampened their determination to provide the best quality of life for Sophie, rich in experience.

In a bid to thwart life restrictions, the Coopers set about creating a wish list of thrill-seeking experiences for non-verbal Sophie, who is also in wheelchair, hearing impaired and has problems with her eyes. They have spent 20 percent of the last 11 years in Intensive Care Units, Neonatal Intensive Care and hospital wards and that’s without acknowledging the never end stream of clinic appointments. Leanne, 35, and Craig, 38, decided it was time to live life to the max. “Life has been so tough, we decided that life is for living, not existing,” said Leanne. “We needed to make quality memories and enjoy life. So we made a plan of exciting things for Sophie to do with her sisters and us as a family.

“There was no way her disabilities would deter her,” said Leanne. “Sophie is fearless and her face lights up when she does an extreme activity.” Sophie’s adventures began when she reached the dizzy heights of 5,000 feet as she flew above the clouds in a light aircraft with her father, who is retired from the RAF Regiment.  

Not content with that, Sophie has plummeted down a zip wire with the biggest smile on her face and enjoyed a ride in a powerboat. 

Her parents even trekked with her to the bottom of Aysgarth Falls in Yorkshire so she could experience the waterfall close up. “When she felt the spray on her face, she just lit up. She will always remember that life experience and treasure it forever. It is amazing to see her do these things and with no fear either. She is such a sociable girl and so cheeky. The biggest thrill-seeker we know.”

“The girls now want to go camping so we are looking into an adapted motor home so we can tour the country and seek out fun things to do while spending quality time together creating more memories.”

The Coopers, who also have daughter Kyla, 10, and live in Lincoln, don’t like to dwell on the tough hand they have been dealt, which started when Leanne went in to labour at 24 weeks pregnant.

“When they were born, we were told there were complications with being born so prematurely and they might not survive. If they did survive, it would be a roller coaster of a journey,” said Leanne. “They were brutally honest with us and asked if we wanted the girls to be baptised.”

“The girls were lifeless; it was the most traumatic experience of my life. They were immediately taken away while I told Craig he needed to be with them. I lay there, alone, for 40 minutes not knowing what was happening.” Seven hours after their births, Leanne was allowed to see her babies. “I don’t think at that point I had ever been so scared of anything in my life,” she said. “I wasn’t able to point them out; I didn’t recognise my own babies because they were so tiny. I was completely overcome with emotion.”

Sophie weighed 1lb 6 oz and Erica was 1lb 9oz. “They were just so tiny and had see-through skin,” said Leanne. “They were in the tiniest nappies, which were still too big. They were covered in lines and tapes and bubble wrap. We couldn’t touch them as they were so fragile, but we talked to them constantly and played music so they’d know Mummy and Daddy were there.”

As predicted, the roller coaster ride quickly began for the sisters. “We arrived at the hospital one morning when they were three days old and as soon as we walked in, we knew there was something wrong. 
“There were so many consultants around both babies and one was running in with a machine. We discovered that Sophie’s lung had collapsed and Erica had a hole in her bowel. We were told that we could lose them both that day,” she adds.

“Over the next few months, we spent every day with them in hospital. I always remember it was summer time and every day on our journey home, we passed a park which was full of children running around and playing with their families. For me, that was torture.”

The problems kept coming for the two tiny sisters. Erica’s bowel problems continued and she had an ileostomy, needing a Stoma bag. Because of this, the family spent their first Christmas together in hospital. As she grew up, Erica was diagnosed with a milder form of Cerebral Palsy than Sophie, along with Autism. 

For Sophie, it has been more serious. Along with her Cerebral Palsy, chronic lung disease and Scoliosis, she developed regular Apnoeas – a condition that affects breathing during sleep. She also started choking on her feeds leading to her being fitted with a Nasogastric tube which passes food to the stomach via the nose. This was later replaced by a Gastrostomy button – a tube which passes nutrients direct to the stomach. She also needed an operation to tighten her oesophagus after she began vomiting a lot of blood. 

Sophie also has epilepsy. “She would often just pass out in my arms,” said Leanne. “In her sleep she would go so rigid and I would comfort her as she came round. Sophie’s seizures got worse over the years alongside her Dystonia and at one point, she was in so much pain, it was devastating to see.”

In the future, it is likely Sophie – who has received a WellChild Award for bravery – will need complex spinal surgery. Leanne and Craig have been warned of the risk that they may lose Sophie but are proud advocates for ‘Quality of Life’ over ‘Quantity of Life’ believing that the surgery will greatly improve the time Sophie has. 

A reminder of the dangers facing Sophie came in November last year, when her condition suddenly deteriorated and she was rushed into intensive care with sepsis, where she required additional breathing support. 
A CT scan revealed further issues. Twists and scar tissue in her intestines that required surgery. But even after the surgery, Sophie’s recovery failed to materialise. And then one of her lungs collapsed.

“We always knew Sophie might die prematurely – but that was the day we thought we might lose her,” says Leanne. It was discovered she had a perforated bowel, which needed to be repaired.

For weeks following the procedure it seemed she was up and down, teetering on the edge of survival, latterly incubated in intensive care. And then the family took the decision to go ahead with a tracheostomy in a bid to ease her breathing difficulties.

“There’s always a fine balance between interventions and quality of life,” says Leanne. “But since the tracheostomy Sophie’s breathing has been much better and she’s not looked back.”

Finally, after nearly six months, Sophie was discharged from the Queen’s Medical Centre in Nottingham, where she had been cared for – and offered a boost to her continued recovery with a stay at Rainbows Hospice for Children and Young People in Leicestershire.

“Those three nights at Rainbows were so needed, not just by Sophie, but the whole family to allow us all some restful, quality time together,” adds Leanne.
Not only is Sophie cared for by its expert team, it is a place where the whole family can spend time together doing fun activities and creating treasured memories.

“Rainbows have been such a great support to our family, they have helped us so much, particularly at difficult times of change with Sophie’s needs. We all love Rainbows and everything it has to offer, not just for Sophie but for her sisters Erica and Kyla also. The girls love everything they get to access there, from the pool to the soft play and the arts and craft.”

“For us as a family, no two days are the same. It does feel it is never-ending. There are days when I really struggle and worry about the future. Even if you are having a good day, you know it can all change in the blink of an eye and that’s hard. Where we go from here on in is unknown but we always keep going, ensuring that Sophie and her sisters live their lives to the fullest.” 

And the wish list? “Oh, that’s back on track,” says Leanne with a chuckle. “As soon as Sophie is fully recovered we’re looking at getting out onto the water – Sophie wants to go sailing! And we are aiming to go to Disneyland Paris in the Autumn… she wants to go on adventures… so there is a sense of new hope on the horizon!”

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