Connie's story tells of specialist support from children's hospice service

“We couldn’t have done it without them” is the message from the Dickason family who feature in a film showcasing the services of East Anglia’s Children’s Hospices True Colours Symptom Management Team.

 The newly launched film follows the story of Connie Dickason, who was born at Addenbrookes hospital in March 2010. Connie was very small and unable to feed when she was born and after numerous tests and scans she was diagnosed with a rare condition called Edwards’ Syndrome. Scans showed that she had three heart defects and also that her kidneys were joined together. At just nine days old Connie’s parents Ann-Marie and Philip were told Connie only had a 50/50 chance of surviving four weeks. After spending three weeks in the Special Care Baby Unit at Addenbrookes Connie’s family just wanted to take her home. The family were made aware of EACH services available which included the True Colours Symptom Management Team (TCT) who provide specialist symptom management around the clock in person and by phone. 

The launch of the film comes just days after it was announced that EACH are the chosen charity for Chariots of Fire 2015. The funds raised through this iconic event will be used to support the TCT team so the charity can continue to provide a team of specialist nurses who deliver the high quality service 24 hours a day, 7 days a week to support families like the Dickasons. 

Ann-Mare Dickason, Connie’s mum, explained: “We were told by doctors that Connie had a 50/50 chance of surviving four weeks. Once she’d been in Addenbrookes for three weeks we decided that we just wanted to take her home. We were worried about the transition from the hospital and were made aware of EACH. “Connie’s care needs were complex, but nurses from EACH TCT team were able to offer advice over the phone or come and visit us at home, at any time, day or night. It meant we felt secure and the pressure of constantly worrying about her was relieved. If she was unsettled, or in pain we could seek advice on the phone or ask them to visit. 

“Support from them also meant we had our first family holiday together. We had the confidence and security to leave our home and truly relax and have fun together. It meant the world to us and was something we simply wouldn’t have been able to do without them. Their support and expertise was invaluable to us and we can never thank them enough. “Connie was 21 months old when she died – which was amazing as she was only given a 5 per cent chance of surviving a year. She died peacefully at home in her daddy’s arms. To be at home, in her own surroundings with all the family is how we wanted it to be and EACH made this possible.”

 In recent months Ann-Marie along with her husband Philip and their eldest daughter Naimh have been working with EACH to create a film of Connie’s story and the services they received both during her life and afterwards. Ann-Marie, added: “Connie was a very unique and special little girl and EACH helped us to cope during a very difficult time. We were able to care for Connie in the best possible way during her short life. We’ve decided to work with EACH to tell Connie’s story so that as many families as possible are aware of the services that EACH can offer – they really are a life-line at time when things seem hopeless.” 

The True Colours Symptom Management Team was formed in 2010, initially funded as a pilot scheme by the True Colour Trust to develop a 24/7 community based service. EACH decided to continue to fund this service from 2013. Connie was born in March 2010 so was one of the first children to benefit. Mandy Binns, EACH Lead Nurse Specialist Practice Nurse, said: “The EACH TCT has been running since 2010 and in this time we have cared for hundreds of children and families across East Anglia. “The clinical advice and support provided by the specialist symptom management team gives reassurance to families at any time of day. It enables children and families to plan care effectively and can empower them to actively manage difficult symptoms which can have a profound impact on the quality of day to day life. 

EACH TCT is part of a much wider team of professionals working to support children and their families and this includes emotional wellbeing support” To show your support for EACH and their TCT service visit their just giving page at https://www.justgiving.com/teams/EACH-Chariots or to enter a team in Chariots of Fire for Sunday 20th September visit www.chariots-of-fire.co.uk/enter

According to race director Charles Hewitson “EACH are an extremely worthwhile and deserving charity, as evidenced by the message from the Dickason family. Chariots of Fire provides a perfect opportunity for local organisations to get involved and for all participants to raise the much needed funds for EACH.” Watch Connie’s story here: https://youtu.be/DQkkkC6OOuA