Why every day is a ‘birthday’ for Julian

Dubai: Little boys usually want toys for their birthdays. The geekier, the better. But as Julian lay on a hospital bed in Dubai last month, waiting for a tumour the size of a tennis ball to be removed from his tiny brain, his “birthday wish” was just to have some cake.

His mum Nermine Saadeh didn’t have the heart to tell him his next birthday was only on April 13, quite some time away. Just then, a brilliant idea struck her.

“Julian was going to complete two and half years on October 13, so I decided to mark his 2.5th birthday,” she said, adding that he got to cut a “teddy bear cake” at a cosy ceremony on that day.

“Life is too short and we do not know what tomorrow brings. So we should celebrate everyday,” said Nermine.

Even earlier, she would mark Julian’s every milestone, whether it was his first tooth surfacing or his first word uttered. “Now more than ever, I believe we should live for the day.”

As a mum, Nermine said nothing could be worse than seeing a child suffer. With family away from the UAE, she would often turn to an online community forum — The Real Mums of Dubai – to give vent to her feelings.

“My heart is breaking into pieces and I just want to cry him (Julian) a river,” she wrote on one gloomy day when her boy was in acute pain after undergoing a procedure to remove extra fluid that had collected around his brain.

But little did she realise the impact it would have on the forum’s members. They instantly reached out to her, praying for Julian and offering to sit with them and cook meals for them. Even the cake that Julian cut on his 2.5th birthday was specially baked by a mum from the forum.

“I feel so overwhelmed,” said an emotional Nermine.

The heartwarming experience prompted her to start a dedicated online forum called The Story of a Little Hero for parents faced with similar challenges.

She said, “It’s just an informal Facebook page where they can speak their mind, express fears, find possible answers and raise awareness about rare medical conditions among children. The idea of the group came to me when I began receiving messages from other mothers whose kids are suffering from rare diseases and unrelated symptoms. Julian’s tumour was diagnosed after we visited seven doctors. If only I had known his gait imbalance – the only symptom he presented – was related to a brain tumour, I could have got him treated earlier and spared him life-threatening complications.”

Nermine said Julian’s surgery is behind them now. “It went off well and he is back home. He has started taking his first firm steps. I am a proud mother of a brave boy. Our family received prayers and support from all over the world. That is what kept us going, If there’s one message I want to share with all parents, it is this: Don’t let anyone tell you that babies grow in their own time, get them checked, even for the smallest of problems.”


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