Changemaker Profile

Zainab

On 28th February 2014, my son Adnan was born. Our lives had changed forever - we became parents for the first time and we were blessed with a beautiful baby boy. However, we had never imagined quite how much our lives would change. Adnan was rushed to intensive care as soon as he was born. He had breathing difficulties, a low birth weight, bone deformities, and facial features which the doctors were concerned about.

After a few weeks of multiple tests, the doctors told us he may have a rare genetic disorder called mucolipidosis type II, also known as MLII or i-Cell disease. I did my research and found out that this condition affects less 2 people in a million. I also learnt that the average life expectancy was 3-5 years old and that there was no treatment, and no cure for this rare disease.

As the days went on, we found other families who also had children with the same condition and felt less lonely. We stopped being sad and embraced our new lives, not focusing on the future and what we were told would happen and instead living for the moment and celebrating every little milestone. Our lives may not be how we imagined they would be before we got Adnan’s diagnosis, and although we have daily struggles and we still worry about the future, we have discovered a whole new world full to the brim with love, hope and joy.

Poetic Curtains

After hearing Zainab’s experience, I felt very moved as Zainab described her experience in such a beautiful and optimistic manner. The family grieved over a future they thought they and Adnan are about to have but are living something else. The window invites the exhibition goers to stare, ponder and wander through it. No matter the situation, the moon will glow every night bringing a new day for you to grab.

Artist Profile

Amitay Leopold

Leopold is a director, animator and designer based in east London. He works in the music industry, short films and commercials. His work ranges from quirky mesmerising 2D animations, contemporary fresh live action and a combination of the two into living collages.

“After hearing Zainab experience, I felt very moved as Zainab described her experience in such a beautiful and optimistic manner. The family grieved over a future they thought they and Adnan are about to have but are living something else.”

Poetic Curtains

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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