Having met in 2010, Isobel and Peter were married in June 2012. Isobel was a single mum of Stephen, xxyy, 40; Nigel, xy, 37; and Mark, xy, 32. Stephen’s father was killed in a road accident whilst he was a child. Isobel was born and brought up in Northumberland and after studying English at Durham became a teacher. At different stages in her career she has taught English to A-level and also young children. She is a trustee and the North-East representative of Unique - www.rarechromo.org/ - having learned by chance of Stephen’s chromosome status in 2012. Peter was born in Lancashire; his parents moved to Leicestershire when he was nine. After studying and doing post-graduate research in Chemistry at Oxford, Peter joined Procter & Gamble in Newcastle. He worked for them, mostly outside of the UK, for 32 years; 19 in product development, 13 in external affairs, much of that time in leadership positions. Peter’s first wife died in 2011 from early and rapid on-set Alzheimer’s disease. He has one child (Andrew, xy, 43).
THE UNMAPPED ROAD - The Journey of a 40 Year Old with XXYY
Isobel will describe how our chance learning of Stephen’s xxyy diagnosis in 2012 when he was 37 explained what had often been described by medics and social workers as “Stephen being Stephen”. As she looks back at Stephen’s journey she will discuss the vital importance of people involved in his care and support being able to figure out ways of engaging with him effectively. She will also contrast the effectiveness of such care and support from organisations outside of the family before and after he was 18. She will paint a picture of a much-loved and well-supported boy who finds adult life a challenge as he and those who support him struggle to balance his need for strong guidance with his desire for personal freedom.
Peter will talk about the challenge, responsibility and joy of entering Stephen’s journey. He will also comment on the pressing need for a much more co-ordinated and informed approach to his care and support by the medical and social care communities.