BE INFORMED CAMPAIGN 

Every child deserves to know from day one.

I am The Duckman, mental health activist, and genetic campaigner. At 11 years old, I was diagnosed with Klinefelter Syndrome (47-XXY), a chromosome disorder that affects around 1 in 600 boys. It is common but rarely diagnosed, and so many boy and men have the condition being totally unaware. I was one of the ultra-rare few to be diagnosed as a child. People don’t find out they have XXY until they are trying to start a family in their 20s or even later in life. 

My Story

When I was 8 years old, I already knew something wasn’t right. I used to wear my mum’s underwear and clothes, and it felt natural to me. Deep down, I felt like I wasn’t like the other boys my age — like I wasn’t from this world. I told my mum I wanted a sex change because I felt trapped in the wrong body. I would look at my private parts and think, this doesn’t belong to me. My body wasn’t developing like other boys’, but nobody had any answers.

 

 

When I was diagnosed, my mum was told by the NHS that I would “live a normal life.” But there was no explanation, no follow-up testing, and no mental health support — only confusion. This caused severe mental health struggles for me as a child, including self-harm and felt isolated. 

My diagnosis came from a blood test during a pre-op at Staffordshire Hospital, which revealed XXY Syndrome. That diagnosis allowed me to start testosterone replacement therapy (TRT).

As I grew into my teens and adulthood, my relationship with my body and identity changed. I began growing facial hair after a few years of being on the TRT but it wasnt thick it was very light to start with and I no longer felt the same urge to transition. Growing up was dreadful! But all those years of fear, suicidal ideation, confusion, and distress could have been avoided if I had been tested at birth.

What We Are Asking 

We call on the UK Department of Health and Social Care, NHS England, and Parliament to implement mandatory newborn screening for Klinefelter Syndrome (XXY) in every hospital across the UK. 

Every newborn has a heel prick, the blood they collect is good enough to run genetic tests like karyotyping or microarray that would pick up XXY. 

Why It Matters 

• Without early testing, many children grow up confused about their identity, like I did — even questioning if they’re in the wrong body.
• Early diagnosis means children and families can get medical answers, not guesses or years of uncertainty.
• Prevents years of unnecessary mental health struggles, including self-harm, anxiety, and isolation.
• Testosterone replacement therapy (TRT) helps correct hormone imbalances, supports normal physical development, improves mood, and reduces the identity confusion many XXY children experience
• The test is simple, inexpensive, and life-changing — one blood test at birth could prevent years of suffering.

One simple test for Klinefelter Syndrome at birth could have changed my entire life.

That’s why I started Born Informed — to fight for mandatory newborn screening for Klinefelter Syndrome in the United Kingdom. Every child deserves to be diagnosed from day one so they never have to suffer like I did.

Thank you for your support.

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