Family need support to prolong life of girl, two
A FAMILY told to make memories with their toddler daughter who has a fatal neurological disorder are trying to raise thousands of pounds to pay for treatment that could prolong her life.
Olivia-may Gater, two, has Canavan’s disease with is a rare, progressive disorder. It is caused by an inherited genetic abnormality that causes deterioration of the white matter myelin - in the brain, which prevents the proper transmission of nerve signals.
Little Olivia cannot feed herself or sit up, and will never be able to walk, says her mum Helen, 33, from Handsacre, near Kings Bromley.
Now the family are trying to raise £10,000 to pay for experimental gene therapy in the United States, which could prolong her life, they say.
Helen said: “She’s always smiling and always laughing which is something they told me when she was diagnosed that she would never learn. So she’s already defeated those odds.
“She just can’t feed herself, sit up, those kinds of things. She’ll never be able to walk either but she’s always still happy and giggling.”
The treatment in America would replace the white and grey matter missing in Olivia’s brain. Canavan’s disease is one of a group of 52 genetic disorders called leukodystrophies.
Helen is a former care worker and has another daughter, Amelia Reece, 11, who attends Nether Stowe School in Lichfield. Olivia’s father Daniel Reece, 34, is currently serving in the Mercian Regiment of the British Army. The mum said: “She’s going to be fully disabled and has been given a lifespan of ten years or less.
“With the gene therapy, hopefully it will prolong her life but it may not reverse the damage that has already been done.”
“I’m still learning about it [Canavan’s disease] myself to be honest as I’d never heard about it until Olivia was diagnosed in 2019.
“Because I’ve got an older daughter I knew what to expect with Olivia, but at four or five months old she was showing no signs of development.
“So she went into Burton Hospital numerous times due to chest infections, and the last time she went in the doctors said they were going to do a full ‘MOT’ on Olivia - completing an MRI scan, brain activity and checking her chest.
“It was November 2019 when it came back that she had a leukodystrophy, and then in December I had a phone call to say that it was Canavan’s disease - she was only five months old.”
She has told how she was stunned when doctors first told her what was wrong with Olivia. She said: “I laughed at first because I had all the doctors and nurses sitting in a room with just me, but then when they all left the shook kicked in and I just broke down and rang my mum.
“They were basically saying when you leave here you need to go and make memories with her - it sounded like they gave her months to live.”
Currently there is no treatments available on the NHS or privately in the UK that can help Olivia, her mum said. But with the ground-breaking gene therapy being trialled in the United States and only just open to citizens from outside the US, it is crucial that Olivia makes it overseas, she said.
And with the treatment only in it’s trial phase, success rates can often differ and come with huge complications. Miss Gater said: “There’s been two successful procedures that I know of so far.
“I’m following a few people from America and the two that I’ve seen gone for it are doing a lot better than if they hadn’t had gone for it.”
However spirits within the family are still high, with Miss Gater touching on the pride for her two daughters and exciting Christmas plans for this year. She said: “She’s coped absolutely brilliantly and she absolutely adores her little sister - she’s like a second mum to her.
“We had a Santa visit last week and she really enjoyed that, and were planning on taking her to Trentham Gardens to see the lights which she’s absolutely obsessed with.”
With £10,000 needed to pay for Olivia to get the ground-breaking treatment in the United States, a number of fundraising plans are in the making.
The coronavirus pandemic has halted the family’s plans for any big fundraising events, but they are focusing on making 2022 the year for raising the money they need.
She said: “I’m hoping next year to do a skydive for Canavan’s disease charities as well as the Birmingham Children’s and Burton hospitals.
“But to get Olivia to America I’m going to hopefully climb Snowdon if coronavirus doesn’t stop me from doing it again, but there are many more that I can hopefully get done.”
If you want to find out more information about Olivia-may or donate to helping her get to America, visit https://www.crowdfunder.co.uk/ saving-olivia-may?fbclidlar0j6haykf 9w1el5ilfmjl0