In Loving Memory of Zakariya Ali

25 March 2009 – 25 June 2026

“Indeed we belong to Allah, and indeed to Him we shall return.”

(Qur’an 2:156)

There are some lives that are not measured by what a person was able to do, but by the love they inspired in others.

Zakariya Ali was one of those extraordinary souls.

Our beloved Zakariya peacefully returned to Allah on 25 June 2026 at just 17 years old, leaving behind a family and community whose lives have been forever changed by the privilege of loving him.

From the day he was born, Zakariya was diagnosed with Monosomy 1p36 Deletion Syndrome, a rare genetic condition that profoundly affected every aspect of his life. He was blind, deaf, unable to mobilise independently or communicate through speech, and lived with epilepsy and complex medical needs that required lifelong specialist care. His life was filled with hospital stays, surgeries, therapies, specialist appointments and unwavering support from those who cared for him. Over the years, he was lovingly cared for by incredible teams across Great Ormond Street Hospital, The Royal Brompton Hospital, Northwick Park Hospital, The Royal National Orthopaedic Hospital, Chelsea and Westminster Hospital, his palliative care team, Shooting Star Children’s Hospices, and his devoted GP, whose compassion, dedication and support remained with him right until the very end. Every one of them became part of our family’s journey, and we will always be grateful for the care and kindness they showed Zakariya.

Yet Zakariya’s story was never about the challenges he faced.

It was about the love that surrounded him.

Although he could not communicate with words, those who knew him understood him in ways that are difficult to explain. Through his sounds, his expressions and his gentle presence, he touched the hearts of everyone he met. Doctors, nurses, carers, teachers and therapists all spoke about him with such affection. To many, he was simply a beautiful soul.

At the centre of Zakariya’s life was his incredible mum, who devoted the last 17 years of her life to caring for him with endless patience, compassion and unwavering love. She was his comfort, his voice and his greatest source of strength. Beside her was his devoted older brother, whose love and dedication created an unbreakable bond between them. Together, they gave Zakariya a life filled with dignity, warmth and unwavering love.

He was equally cherished by his father, his grandparents, aunties, uncles, cousins and extended family from both sides, as well as by the many friends who loved him dearly. His grandmother, Hawa Yusuf Mohamed, shared an especially precious bond with Zakariya, showering him with endless love, affection and comfort throughout his life. Their connection was truly special and is something our family will always treasure.

Zakariya also attended The Village School, where he was deeply loved by his teachers, therapists and support staff. Everywhere he went, he left a lasting impression on the people fortunate enough to know him.

Zakariya reminded us that a person’s life is never measured by what they are able to achieve physically, but by the love they inspire in others. Without ever speaking a word, he taught everyone around him patience, compassion, gratitude and the true meaning of unconditional love.

After spending four months in hospital, Zakariya was blessed to return home to the comfort of his family. Just two weeks later, he peacefully passed away in his sleep.

Although our hearts are broken, our faith gives us comfort. As Muslims, we believe that children are among the people of Paradise, and we find peace in knowing that Zakariya is now free from every pain, every hospital stay and every hardship he endured in this world. We pray that Allah (SWT) reunites us with him one day in Jannatul Firdaus.

To honour Zakariya’s beautiful life, we have created this page with the intention of establishing a lasting Sadaqah Jariyah in his name. All funds raised will be donated to The 1p36 Family Trust, a UK charity dedicated to supporting children, adults and families affected by Monosomy 1p36 Deletion Syndrome. Through your generosity, we hope to raise awareness, provide support and help improve the lives of those living with this rare genetic condition, so that Zakariya’s legacy continues to benefit others for years to come, by the permission of Allah.

If you are able to support this cause, we are sincerely grateful. If you are unable to donate, we kindly ask that you remember Zakariya and our family in your du’as. Your prayers are every bit as meaningful to us as your generosity.

To everyone who cared for Zakariya, prayed for him, taught him, treated him, visited him or loved him over the past 17 years: thank you. You became part of his story, and our family will always be grateful for the kindness and compassion you showed him.

Zakariya may never have spoken with words, but his life spoke louder than words ever could.

Forever loved. Forever remembered. Forever our beautiful boy.