My husband and I are parents to Fraser and Jude. We live near Wakefield in Yorkshire, England. Jude was born in 2018 and diagnosed with Schinzel-Giedion Syndrome shortly after birth following the onset of seizures and the appearance of a malignant sacral tumour. Jude passed away in March 2022 at the age of 3 years old.
Jude had very complex needs. We spent countless hours in hospitals discussing his requirements for care, medication and treatment. He had almost every known symptom of SGS and then some more in addition!
Having a child with a life-limiting condition forced me to learn new skills and opened my eyes to the difficulties and struggles of caring for a seriously ill child. Jude helped me to become more confident in my abilities as a mother and more compassionate to others. He showed me the meaning of true unconditional love every single day of his life.
Prior to the arrival of Jude, I worked as a solicitor, specialising in clinical negligence and personal injury. I have a BA Honours degree in German and Business Studies and worked as a marketing and HR assistant before undertaking postgraduate qualifications in law. I am now a solicitor, non-practising. I have a foundation level qualification in Counselling Skills and hope to be able to continue this path in the future.
The establishment of the SGS Foundation has been a significant step in my journey with Jude. I am passionate about creating a legacy for our SGS children. I hope that the work of the SGS Foundation will give our children’s short lives meaning and significance. I have a particular interest in communication skills with multi-sensory impaired children as well as the oncological aspect of SGS.
Board of Trustees
Our Board of Trustees
Our Trustees are all parents of children with Schinzel-Giedion Syndrome. We are all volunteers, passionately driven to raise awareness and improve the lives of children born with this rare genetic disorder.
Founder and Chair of Trustees
Sign-up to receive family stories and updates on our research projects and fundraising campaigns.