help@rarechromo.org
Understanding Rare Chromosome and Gene Disorders
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Helen Campbell

Interim chair

Hi , I’m Helen. My younger son Patrick had a profound speech and communication delay which lead him be tested at the age of 4 years in 2009. This found that he has a deletion 18p11.32p11.21. He also has moderate learning difficulties and  fine and gross motor skill issues. Further testing has shown that my older son appears to have no chromosome abnormalities but that both myself and my father had 16q and 22q duplications; neither of us had any significant issues. My husband and I were devastated by both the diagnosis for Patrick and the way in which it was delivered. Finding Unique and getting that initial communication  was a lifeline and subsequently I’ve been able to speak or email with other parents getting an 18p deletion diagnosis. Professionally I’m a chartered accountant and the Finance Director of English National Opera. I joined Unique’s board of trustees during 2014 because I wanted to use the skills I’d learnt to help an organisation which helped me.