Understanding Rare Chromosome and Gene Disorders
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Helen Campbell


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 & 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 & the Finance Director of English National Opera. I joined Unique as a trustee during 2014 because I wanted to use the skills I’d learnt to help an organisation which helped me. I have previously been Unique’s Chair of Trustees.