“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.”
Leanne Cooper is dealing with a challenge no parent should ever even have to contemplate.
Her daughter, Sophie, 11, suffers from several life-limiting conditions, including cerebral palsy, chronic lung disease and scoliosis, a curvature of the spine. Sophie’s twin sister, Erica, has a milder form of cerebral palsy and autism.
“For us as a family, no two days are the same. It does feel it is never-ending,” says Leanne.
Sophie and Erica, were extremely premature, being born four months early. Doctors told Leanne and her husband Craig, 38, that it was unlikely they would survive to the following day.
The girls defied the odds and despite Sophie’s set-backs and restrictions, the Coopers are determined to make the most of every moment and have created a wish-list of experiences for the whole family.
“Life has been so tough, we decided that life is for living, not existing,” says Leanne.
“We needed to make quality memories and enjoy life. There was no way her disabilities would deter her.”
This week marks Children’s Hospice Week, a week dedicated to raising awareness and funds for children’s hospice services across the UK. This year’s campaign, Life’s Short, led by Together for Short Lives, aims to get everyone thinking about the moments that matter most to them.
The Cooper are backing the campaign. They attend Loughborough-based Rainbows Hospice for Children and Young People, the only specialist care centre of its kind in the East Midlands, supporting more than 400 young children with life-limiting conditions across the region.
Sophie, who has received a WellChild Award for bravery, and her family spent time at Rainbows following a six-month stay at Queen’s Medical Centre in Nottingham after she was admitted in November 2017.
“We always knew Sophie might die prematurely,” says Leanne.
“But that was the day we thought we might lose her.”
Sophie had a perforated bowel, which needed to be repaired and in the weeks following, Sophie’s life was hanging in the balance. She had 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 looked back.”
The hospice was able to offer a boost to her continued recovery.
“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,” recalls Leanne.
“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.”
The Loughborough hospice is marking the week alongside a national campaign from Together for Short Lives.
“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,” says Leanne.
To help raise awareness for the week, Together for Short Lives are encouraging the public to share their own “Life’s short” moments using the hashtags, #LifesShort and #ChildrensHospiceWeek.
Life's short, for all of us. We all want to make the most of every minute, but for seriously ill children there’s no time to waste. For #ChildrensHospiceWeek, we asked seriously ill children to share their moments that matter. Share yours with the hashtag #LifesShort 🗨️ pic.twitter.com/0wxLeMdU3s
— Together4ShortLives (@Tog4ShortLives) May 21, 2018
“Every year the week gives us the opportunity to celebrate and support the lifeline work done by children’s hospices across the UK,” says Emma Dixon of Together for Short Lives.
The future is uncertain for the Cooper family but they are facing it with as positive an attitude as possible, says Leanne.
“As soon as Sophie is fully recovered we’re looking at getting out onto the water as Sophie wants to go sailing.
“We are also 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.
“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.”
To donate, visit www.togetherforshortlives.org.uk/lifesshort and for more information on Rainbows Hospice for Children and Young People, visit www.rainbows.co.uk