Trisomy 10

Thank you for giving me such positive responses from my first post – emails, telephone calls and conversations with friends and family – some I haven’t heard from in years! Lydia has made such a positive impact on so many people!

Lydia was diagnosed at birth with a rare chromosomal abnormality called Trisomy 10. It is very rare and, as far as I know, most children with this condition do not live past early childhood - Lydia died when she was 18 years old. This condition meant that Lydia had a number of serious problems including partial sight, partial hearing, developmental delay and mental retardation. She was never able to walk or talk, she spent her whole life in nappies and some of her symptoms were similar to those of children with severe autism.

Even though she never spoke a word in her life, or was unable to maintain eye contact with anyone she had many friends and people who cared about her. Lydia was unable to communicate in the conventional sense, but we knew that she ‘recognised’ some people by the reactions she made when they were around. For the most part, she ignored most people, living in a world of her own.

Since posting my first blog, a friend discussed with me the times when she used to babysit Lydia and how she developed a close relationship her over the years. Whenever Mel used to see Lydia she would hold her hand and lift it to her hair (she had lovely long hair) and guide Lydia’s hand so that she could feel the silkiness of it. Over the years, Lydia grew to recognise her and whenever she was around her Lydia would lift her hand and stroke Mel’s hair. She had similar ways of recognizing people – she would lift her fingers to her granddad’s mouth so he could kiss her fingers and she would stroke her sister’s face; she also recognised certain voices, and would turn towards them when they spoke.

For more information about Trisomy 10:
NORD – National Organisation for Rare Disorders (database search article on Trisomy 10):
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Chromosome%2010%2C%20Distal%20Trisomy%2010q%20