Hope for Kenan – A 3-Year-Old Rare Disease Child in Gaza

My name is Johann. I live in Australia and care for my daughter Lucia, who suffers from WOREE Syndrome — a rare, life-limiting neurological condition caused by a mutation in the WWOX gene. Even in one of the world’s most advanced healthcare systems, our lives are shaped by relentless hospital visits, medications, and therapies.

But nothing compares to what Mohamed Deeb and his wife Haya are enduring in Gaza.

Their only child, Kenan, is just 3 years old and has WOREE Syndrome, the same condition as my daughter. He suffers from profound developmental disabilities, seizures and feeding difficulties. But while we have access to specialist teams and support, the Deeb family is trapped in a war zone.

Since October 7, 2023, they have been displaced over 20 times, carrying their medically fragile child through streets filled with rubble, fear, and shelling. They now live with relatives in overcrowded conditions, unable to afford rent, and with no income. They haven’t eaten meat in five months. Some nights, they go to sleep hungry — including Kenan.

The medications Kenan needs aren’t available. Even basic supplies like nappies and infant formula are now unaffordable or unavailable. Their apartment — which lies in what is considered one of the "safer" zones of Gaza — is out of reach due to rent costs and ongoing instability. Still, they remain hopeful.

What Are We Raising Funds For?

We are raising AUD $10,000 (USD ~$6,000) to help:

This is not a one-time crisis — this is ongoing survival.

Why This Matters

Kenan’s condition is difficult enough to manage in a functioning hospital, with a team of neurologists, therapists, and equipment. In Gaza, under siege and bombarded daily, it’s nearly impossible.

Mohamed and Haya are deeply devoted parents. They love their son fiercely and care for him with grace under pressure few of us will ever understand. They do not ask for charity — they ask for a chance to keep their son alive, and to hold on to hope.

I’ve already sent them personal financial assistance — and now I’m asking for your help. Every dollar raised will go directly to this family. I will personally handle the transfer of funds using safe and verified channels. There will be full transparency, and I will post regular updates from the family with their consent.

What You Can Do

Donate whatever you can. Even a few dollars will buy a can of formula or a day’s worth of nappies.

Share this story. The more eyes it reaches, the greater the impact.

Pray, hope, and believe in Kenan. Because in Gaza, hope is often the only medicine left.

Thank you, from the bottom of my heart —

For Kenan. For life. For dignity.