Lizzie and Mark have five children between them. Their son, William, has Edward’s Syndrome, a condition also known as t18 or trisomy 18.
When Lizzie was pregnant with William a routine ultrasound detected a shadow and prompted further tests, resulting a William being diagnosed with Edward’s Syndrome. Lizzie was told that there was a high possibility that William would not survive to full-term and that there was a chance that her life was under threat too.
When William was born Lizzie and Mark were told that he was unlikely to live for more than three months. The doctors told the family that if William was still here in a year they could consider heart surgery but as he had such a short life expectancy they were advised to take him home and spend some quality time with him.
During his first year, William needed constant supervision as he would stop breathing. To help Lizzie and Mark provide 24 hour care for William they had carers two nights a week and friends supporting them three nights a week. Their house became full of people – nurses and friends - all coming around to care for William.
William is now nine years old. Over the years there have been numerous multi-agency meetings where his care plan has been discussed and agreed. At times, there has been very little change in his condition so few adjustments needed. However, at other times the team have needed to rethink how best to meet his needs. Lizzie and Mark spend hours organising care shifts and appointments by phone and email; taking William to medical appointments and assessments; organising equipment deliveries; and transporting William to school and respite care.
William and his family are supported by their local children’s hospice service, Little Harbour. The hospice has given the family a well earned rest and is the only holiday they have been able to go on in eight years.
Lizzie is passionate that families are able to access all the support they need to allow them to make the most of their time with their children. She has supported the work of Together for Short Lives as a member of our family community and parent advisory group. In 2012 she set up the Cornwall Parents Palliative Network, a local support and information charity and website run for, and by, parents.
Lizzie said: “Nothing can ever prepare you for the news that your baby is going to have a short life, and has a really complex condition. No one can comprehend how life can change in a second. When we heard the devastating news about William I felt like I was on a film set, it felt like it was someone else’s lives, not ours they were talking about, I was hoping the camera would stop rolling and everything would be normal again.
“Parents desperately need information and support – especially at the beginning but also after coming to terms with things. You need to know that there’s a lifeline – an anchor and someone to help you weather the storm.”