Sophie's story

Sophie Cooper suffers from several life-limiting illnesses but it hasn’t stopped her from flying in a plane, zip wiring and racing in a power boat. 

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 never escape the knowledge their daughter could be taken from them at any time.

In a bid to thwart life restrictions, last year the Coopers set about creating a wish list of thrill-seeking experiences for non-verbal Sophie, who is also in wheelchair, profoundly deaf and has problems with her eyes. They have spent 20 percent of the last 10 years in Intensive Care Units, Neonatal Intensive Care and hospital wards. Leanne and Craig 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.

“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 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, cheeky girl. The biggest thrill-seeker we know.”

The Coopers, who also have nine-year-old daughter Kyla, don’t like to dwell on the tough hand they have been dealt.

“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. 

“The girls were lifeless; it was the most traumatic experience of my life. They were immediately taken away and 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.”

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. 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.”

“Over the next few months, we spent every day with them in hospital. I always remember it was summer time and 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.”

For the tiny sisters, the problems kept occurring. 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 to 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 an 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. She was in so much pain, it was devastating to see.”

The family have been receiving support from Rainbows. Not only is Sophie cared for by our 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.”

In the future, it is likely Sophie will need a tracheostomy at the same time as complex spinal surgery. Leanne and Craig have been warned they may lose Sophie but are proud advocates for ‘quality of life’ over ‘quantity of life’ believing that the surgery will greatly improve Sophie’s quality of life. 

Leanne added: “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.”