Understanding Rare
Chromosome and Gene Disorders
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Ben Stern

I initially became involved with Unique shortly after my second daughter, India, was diagnosed with an unbalanced translocation (duplication 18q21.1 to qter, deletion 18p11.32). At the time she was three weeks old and had been admitted to hospital after struggling to breathe. After several weeks we were told by the consultant that he felt the underlying cause of her problems was genetic. I clearly remember the confusion we felt and unfortunately, because of the rarity of her condition, the medical staff were not able to help us understand what this meant for India and her future. That was when my wife found out about Unique after one of many long nights searching the internet. The help Bev and the team were able to give us was incredible, not to mention the ongoing support of the Unique community. I was delighted when the opportunity came up to become a trustee of the charity and get more involved. Outside Unique, I am a partner of Lincoln Private Investment Office, advising clients on their investments and wider wealth.