Fareham mum's plea to raise total of £350,000 by next week for life-saving surgery
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House-bound Leah Boxall said she needs three specialist operations by a leading neurosurgeon in New York after a debilitating condition left her spine collapsing forward, crushing her brain stem.
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Hide AdThe 39-year-old, of Fareham, has lived with Ehlers-Danlos syndromes (EDS) for many years, however, a car crash in 2011 exacerbated the symptoms and private surgery in the UK in 2019 to insert metal rods to support her spine left her feeling worse.
EDS is a group of rare inherited conditions that exist in different forms and affect connective tissue. It can cause skin to break or bruise easily, hyper-mobile joints and pain.
Now Leah, who is a single mother to 17-year-old Caitlyn, has been told the rods in her body are not connected and if one rod or her neck bones break then major blood vessels could get crushed.
This could lead her to have a heart attack, stroke or die.
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Hide AdThere’s also an area in Leah’s neck with a piece of pointed bone right next to an artery. If it punctures the artery Leah will bleed internally or a clot could travel and cause or stroke or worse
She said: ‘There’s not one minute of the day where I’m pain free. My head and neck are currently set in opposite directions and the force of that is excruciating.
‘I can no longer stand up straight and the discs in my lower spine are bulging which is incredibly painful. I don’t have a life anymore, even sitting up now is vile.
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Hide Ad‘I’m still a mum so it’s my job to put on a brave face and keep smiling when sometimes I just want to cry for the pain.’
She said her only option is surgeries by world renowned neurosurgeon, Dr Paolo Bolognese, who has more than 20 years experience in complex revision operations for patients with EDS.
Surgeons in the UK are primarily trained in trauma and do not have the experience in EDS that Dr Bolognese has, she said.
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Hide AdSince launching a fundraising campaign for the £350,000 needed to pay for the treatment Leah has raised £11,900 from generous supporters.
However, she has been told she needs to have the full amount by October 13 or her treatments will be cancelled.
Former business owner Leah said: ‘Funding is everything, every day I wake up scared because I don’t know how long I have before something terrible happens.
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Hide Ad‘I’m essentially asking total strangers to help me live, it’s very humbling. To reach the goal would be truly amazing for me and for my daughter who deserves a mum to be around for her future.
‘I have to get there because I can’t leave my daughter without a mum. It’s also completely terrifying to think that if I don’t get there she could be left with a paralysed mum instead.’
College student Caitlyn added: ‘Please help my mum, she’s suffering so much and I can’t change it for her.
‘She’s my world and I need her.’
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Hide AdLeah also had two surgeries in Spain in 2017 funded in part by her and part by donations, which kept her alive at the time.
If Leah is able to have her surgeries and recover she hopes to study to become a radiographer at university.
To donate please visit uk.gofundme.com/f/leahs-lifeline-a-mission-to-live
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