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 has very complex needs and has significant hearing and visual impairments. His medical position changes day to day and is constantly evolving as he grows and develops. Jude has multiple specialists and we are frequent visitors to most hospital waiting rooms throughout Yorkshire!
Jude’s arrival and his diagnosis of Schinzel Giedion syndrome have had a huge impact on our lives. Prior to the arrival of Jude, I worked as a solicitor, specialising in clinical negligence and personal injury. I am now Jude’s full-time carer. Jude’s medical needs have forced me to learn new skills and opened my eyes to the difficulties and struggles of caring for a seriously ill child. He has also helped me to become more confident in my abilities as a mother, more compassionate to others, and shown me the meaning of absolute unconditional love.
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
Policy Making & Research
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