10:49am Thursday 24th April 2008
By Nicola Fenwick
A COUPLE paid £1,000 to store their daughter's stem cells - only to find they could not be used to fight a rare brain tumour.
Now the parents of fiveyear- old Naomi Savage are clinging to the hope that more conventional treatment will save her life.
Naomi has a ependymoma brain tumour, which only strikes young children and the elderly. Only 20 cases are reported in the UK each year.
The youngster underwent surgery, which failed to completely remove the tumour, and is nearing the end of a 56- week chemotherapy course.
Naomi - given a survival rate of between 35 and 50 per cent - now faces a further brain operation which could leave her blind.
Her parents, Lucy and Mark, of Northallerton, North Yorkshire, have launched the Fight For Life Fund to raise money for research into brain tumour treatment.
"The more I get to know Naomi, the more I love her,"
said Mrs Savage, who is a specialist intravenous nurse at the town's Friarage Hospital.
"Every parent wants to make things right for their children. That's why I want to raise the money. I want to do it while she is alive. I want her to benefit from it.
"I don't want it to be a memorial fund. There's a strong possibility that it might turn into that, but not yet.
"While there is breath in my body and breath in her body, I want to do this."
Her mother had Naomi's stem cells, contained in umbilical cord blood, stored after reading during her pregnancy that they could be used later in life to treat and cure immune system disorders, such as leukaemia.
Scientist hope that in the future, the cord blood, which can be stored for up to 20 years in a frozen state, will cure other life-threatening conditions, affecting not only the donor but other family members.
However, the Savages were told Naomi's was a condition still beyond the scope of stem cell therapy, being pioneered by scientists at Newcastle University.
The tumour was diagnosed last May. Measuring 10cm by 10cm, it went undetected until Naomi developed a tremor in her hand and leg and complained of poor vision.
She was taken to the Friarage Hospital and underwent a CT scan.
"At the end of the scan, I felt they were avoiding eye contact with me and my stomach just went," said Mrs Savage.
"The doctor said I'm really sorry. This is a parent's worst nightmare, but Naomi has a massive brain tumour'.
"We looked at our little girl.
She was only four, with her long blonde hair, due to start primary school in September - and just like that your world is smashed apart."
Naomi underwent an operation on the tumour at Leeds General Infirmary. Her parents made a video and took pictures beforehand, uncertain if she would survive.
Since then, Naomi has been treated at St James' Hospital, Leeds. If the next operation fails to remove all traces of the tumour, she will undergo radiotherapy.
■ Donations can be made to an HSBC account. Cheques should be payable to Fight For Life Fund and have the account number, 21431307,and sort code, 40-35-03 on the back.
They can be taken into the Northallerton branch or sent by post to: Fight For Life Fund, c/o HSBC Bank, 189 High Street, Northallerton, North Yorkshire, DL7 8LQ.
Donations can also be made via phone or online banking.
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