Our Julia's House Parent trustees would like to introduce themselves and tell you a little more about how and why they became involved with Julia's House. Having a parent's perspective is essential to providing an outstanding service to the families we care for and we are so pleased to have Chris and Ruth's vital input.
Chris Jerram
My name is Chris Jerram and I’m a dad to three children. Julia’s House has been a lifeline to my son Noah (and my whole family) since 2018 and at the end of 2023, I was very happy to take up the position of Parent Trustee.
Noah suffers from a defective gene in his brain causing profound learning difficulties and complex epilepsy. At about age seven, his seizures began, mild at first but despite a complex drug regime, over the years becoming more and more aggressive.
He has undergone surgeries in Southampton and later Bristol for an emergency Corpus Callosotomy, an operation to separate the 2 hemispheres of the brain in order to control the most dangerous of the seizures.
For now, the seizures are under control and less frequent, but only time will tell whether this operation proves to be effective in preventing major events.
During all these years, Julia’s House has been there for Noah, with support, advice, laughter and friendship. It has been a hard road but made so much easier by having Julia’s House at our side. I understand the pressures, stresses, and uncertainties that parents face in having a child (or sibling) with a life limiting condition. I equally know how important it is to have a champion like Julia’s House fighting alongside you on the journey.
Professionally, I work as a Digital Product owner for a Telecoms company and have worked within Telecommunications for the last 30 years. Luckily, I have been able to work from home (or hospitals) during these years.
My role as Parent Trustee is to represent the views and experiences of the Julia’s House families, by bringing a parent and family perspective to the areas discussed and to help the Board understand a parent’s viewpoint. I am very new to the role and am therefore very keen to hear from any families with their ideas or suggestions.
I look forward to hearing from you and hope that I can meet some of you later in the year.
Chris
Ruth Spurling
My name is Ruth Spurling, I'm a mum to three boys and I’ve been involved with Julia’s House since 2019, as a service user and then taking up the role of Parent Trustee in April 2023.
In 2018, our twin son Tom became unwell with hepatoblastoma; a rare form of childhood liver cancer. He underwent nine months of intense treatment and two major surgeries, but sadly died in 2019, just before his 8th birthday. Julia’s House was involved at the point at which Tom’s illness changed to palliative and end of life care and have since played a pivotal role in supporting our whole family. We have been cared for through the sibling support service, having a named nurse, counselling, holistic care and all with the continuous opportunity to connect with other families in a similar position.
I have a strong understanding of the pressure a family may face when their child becomes ill and the enduring difficulties each person may encounter. From the point of diagnosis, in the palliative stage, at the end of life and how life is when a child is no longer here; it affects all of us in a unique way, and this is when Julia’s House plays an important role. Unfortunately, I have not only experienced this from the perspective of a mother, but also as a sibling in my adolescence, when my own brother became very ill and sadly died of melanoma skin cancer. My experience over the past two decades as a sibling and more recently as a parent, gives me a unique level of understanding and empathy for all family members and an appreciation of the realities a family may endure in both the short and long term.
Professionally, I have over 20 years' experience of being involved with and working in the outdoor adventure and education sector. I have been responsible for the operations management and business coordination of the UK's and Europe's leading Inspection Body for the Adventure Parks industry and, since losing Tom, I have slowly regained some strength and am now qualifying as a teacher and working in the Further Education sector at a Land Based College in Dorset.
As a Parent Trustee on the Board, my role and responsibility is to represent the experiences of the Julia’s House families, by bringing a parent and family perspective to the areas discussed and to help the Board understand a parent’s viewpoint, with the aim of maintaining a good link between the Board and our parent/carer community. I’d love to hear any ideas or suggestions you have throughout the year that could influence the service and Board decisions that impact Julia’s House families.
If any of our families wish to speak to Chris or Ruth you can now do so by emailing familytrustees@juliashouse.org
