By all accounts Yusra's life was miraculous.
She was diagnosed with Joubert’s Syndrome before she was even born - an extremely rare genetic condition in children that affects their development - and given uncertain odds of surviving birth.
But survive she did. Yusra was born on 26th September 2017 and despite frequent medical involvement, she was thriving! She attended a wonderful additional needs playgroup, making good progress with all her therapies, demonstrating her strength and tenacity, and expressing her vibrant personality with increasing clarity and assertiveness.
There were tough times too, with long hospital admissions, numerous appointments and being reliant on support from a number of healthcare professionals. As her parents and primary carers, we strived to give her our very best and shaped our lives around her.
We named her Yusra because it means 'ease'. We wanted to affirm that no matter how many tests would come her way she was never anything less than an absolute joy in our lives. As she grew, so did we. Our families and friends embraced her with love, cherishing her smile and her cheeky character.
She would pass away on 8th March 2022 after a sudden and unexpected cardiac arrest 4 days prior, with no signs of any illness.
But her part in this world is not done. If you met her you knew. She changed every life she touched. We have created the Foundation as a testament to her memory in a way that can benefit children like her, carers like us, and the communities we are part of.