Two years ago, Nicole Allalouf was given almost unbearable news. Her then 10-month-old daughter, Lucy, who had been suffering from up to 300 unexplained seizures every day, had an extremely rare brain tumour. It required dangerously invasive brain surgery.
Ever since then, Nicole (daughter of Dame Gail Ronson and businessman Gerald Ronson) and her husband, Israeli businessman Yoyo Allalouf, have been doing what any parent would do: everything in their power to give Lucy a chance of survival.
They have spent the last two years taking their daughter, now nearly three years old, for treatment at Great Ormond Street Hospital and to America for some of the most advanced brain surgery available to remove the tumour.
Nicole has found it difficult to speak publicly about dealing with her daughter’s condition, calling her emotions “still too raw” — especially with another operation due in the US.
But she is anxious to raise awareness of the acheivement of her supporters, her friends and family in raising £500,000 for children like Lucy at Great Ormond Street Hospital.
Lucy has a hypothalamic haratoma, a brain tumour so rare it occurs only in one in a million births.
The tumour is wrapped around the hypothalamus, a key part of the brain responsible for maintaining the body’s status quo, making its removal very difficult.
The surgery required to remove it comes with “substantial” risk — and no guarantee of a cure.
The tumour causes laughing fits, known as gelastic seizures. After suffering up to 300 seizures a day, Lucy was diagnosed by Great Ormond Street aged 10 months.
Nicole says: “It’s not a genetic disorder, it’s a benign tumour which they think appears in the brain during the first six months of pregnancy, but they don’t know what causes it.
“Lucy still suffers from the seizures even now, and she will need the operation in America to have a chance of stopping them. This is the second time we’re taking her there for an operation, because they can only remove 50 per cent of the tumour at a time.
“We think the operation will be in April, but we’re still liaising with Great Ormond Street and with the Barrow Neurological Institute (BNI) in Phoenix, Arizona, where she’ll be having the operation.”
No hospital in the UK can offer the complicated surgery performed by the BNI, which had performed as few as 106 similar operations when Lucy first went for treatment there, but Great Ormond Street is working closely with the BNI to ensure Lucy gets the best possible care.
The girl’s plight has inspired family friends Elaine and Paul Davis, who run the Paulie fashion shops, to raise funds.
The couple have used the opening of their new store to raise money for the construction of a new unit at Great Ormond Street, via the Ronson Telemetry Unit Appeal.
Its equipment will help scan and assess children’s brain activity so that problem areas can be pinpointed before brain surgery takes place. It would have helped identify the cause of Lucy’s seizures more quickly, and Nicole wants other children to have that opportunity.
The Allaloufs, who have a healthy seven-month-old son, George, have been very touched by the strong support from families and friends throughout Lucy’s illness, and the support they have given for the cause they champion.
Nicole said: “We’re so, so grateful to the people who have raised money for us; we’ve raised £500,000, which is our target, and it’s enough to build a four-bed unit at the new Morgan Stanley building at Great Ormond Street, which opens in May.
“It’s so wonderful to know that, even in such difficult times, people can still be so generous and supportive.”