At the beginning of December 2008, at the age of two and a half, our beautiful goddaughter, Lilia, was diagnosed with rhabdomyosarcoma, an extremely rare form of childhood cancer, in her right middle ear. This is her story.

After the initial diagnosis, Lilia's mum and dad were told by her consultant at the Marsden Hospital that she had an 85% chance of cure, and that her treatment would be 9 sessions of chemotherapy over 6 months, with 6 weeks of radiotherapy during that time.  Lilia tolerated the chemo well, and an MRI scan in February 2009 showed that the tumour had more than halved in size. We all shed tears of joy and relief.  The radiotherapy then started, entailing a general anaesthetic every weekday for 6 weeks, which she also tolerated well.  Throughout her treatment, Lilia was very brave, and stayed her cheeky, affectionate self. She was so full of energy and life, that had it not been for the loss of her blond curls, you would never have known that she was so ill.

Then out of the blue in June 2009, she had several small seizures. Initial investigations showed nothing wrong, so she went into the Marsden with her mum Claire for her final chemo. It was 16th June, Lilia's 3rd birthday. The next day she had a prolonged seizure and had to be put on life support and taken by ambulance to the Evelina Children's Unit at St Thomas' Hospital.  There an emergency MRI scan showed that the cancer cells had mutated, turned around and entered the fluid around her brain, causing the seizures.  The risk of this happening was less than one in 200 million. A new course of chemo was administered at the Marsden, and Lilia recovered enough to be taken home.  She had three lovely weeks at home with her mum and dad and her older sister Eloise (then 5), and although she didn't really get out of bed, she was back to her funny, cheeky, loving self.  On 16th July Lilia returned to the Marsden for the second dose of the new chemo. However the next day she had another prolonged seizure and her parents were given the devastating and life-shattering news that the disease had progressed and there was nothing more they could do.  The family were taken by ambulance to CHASE, where they were welcomed like family and given the most incredible care and support.  The whole family were able to spend every minute of Lilia's last 16 days together. During this time, Matt and I visited CHASE as often as we could, both with our children and on our own. The staff made us feel incredibly welcome, providing food and endless cups of tea.  

Lilia died peacefully in her mum's arms in the early hours of 2nd August 2009. Her last word was "Kiss." Although there are no words to describe the utter devastation and loss her parents continue to feel more than 2 years later, CHASE made an unbearable situation bearable, and continue to do so with bereavement support, counselling and play therapy for her sister. Several of the nurses from CHASE attended Lilia's funeral.

CHASE needs £5 million a year to provide their amazing service, and they receive next to nothing from the government. 

Matt and I are running the London Marathon to give something back to the amazing people that work at Shooting Star CHASE, to enable them to continue to support other families who find themselves in similar nightmare circumstances. Please help us to raise as much money as possible by giving what you can. Thank-you.

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