Changemaker Profile

Rebecca and Hannah

It’s a difficult thing, to admit to yourself that you think there is something wrong with your child. It’s harder again to say that statement out loud to your loved ones or Health Professionals. It becomes a battlefield when those professionals repeatedly dismiss your concerns. It took strength I didn’t know I possessed to persevere for 18 months in the face of accusations of Munchausen’s by proxy and statements such as “I can assure you Mrs Pender, there is categorically nothing wrong your child, she’s just lazy.”

Hannah’s primary diagnosis is Inv Dup Del 8p, a rare genetic condition with only 65 known affected worldwide. She also lives with a severe learning disability, epilepsy and complex arachnoid cysts in her pineal gland. She is also a daughter, a sister, a granddaughter and Nanas Hannah. She is a cousin, a friend, a student and a teacher. She is a bringer of light in what sometimes seems like quite a dark world.

Rebecca, Hannah and Life with Inv Dup Del 8p

Life has different challenges for each one of us and I believe it’s our responsibility to get to familiarise ourselves with challenges that are as rare as ‘I am number 17’. By raising awareness of their rare conditions, we can understand their needs, call for action for deeper scientific research, support their families and show them that they are not alone.

Artist Profile

Nurbanu Asena

Born and raised in Ankara, Nurbanu moved to New York at the age of 17 to study Design & Technology at Parsons School of Design. After graduation, she worked as a freelance commissioned artist on various projects that blend documentary filmmaking, animation, illustration and design. She likes to work on projects that are in touch with psychology, society, children and empowerment.

“Life has different challenges for each one of us and I believe it’s our responsibility to familiarise ourselves with challenges that are as rare as ‘I am number 17’ patients. By raising awareness to their diseases, we can understand their needs, call for action for deeper scientific research, support their families and show them that they are not alone.”

Rebecca, Hannah and Life with Inv Dup Del 8p

This campaign isn’t just about us – it’s about you. If you live with or care for someone with a rare disease, share your experience on social media using the hashtag #IAmNumber17.

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