Desperate race to save mum’s life
AMUM with a rare condition which means her spine is being slowly crushed says she has just two weeks left to fund a new operation - or she will lose her last chance to survive.
Samantha Smith, from ‘I must now fundraise for my own life and for my babies to have the mummy they so desperately need and deserve’ Rochdale, made a heartbreaking appeal on her fundraising page this week, saying she was facing ‘the last haul’.
Samantha, 32, suffers from Ehlers Danlos syndrome, which weakens the body’s connective tissues causing pain, dislocations and cardiac abnormalities.
She has raised almost £180,000 of the £250,000 needed to pay for the procedure and set up a GoFundMe campaign for the remainder.
The surgery is not available on the NHS.
The mother-of-two has one last-ditch operation scheduled at an Arizona hospital for January 25.
She said if she doesn’t raise the money she will lose her “chance to survive.”
Posting on her GoFundMe page over Christmas she said: “I must now fundraise for my own life and for my babies to have the mummy they so desperately need and deserve.
“I am in constant pain in my neck, head and spine and week in, week out my neurological damage is becoming harder to ignore.”
Samantha, also said her children Jensen, 10, and Brooke, eight, were left wondering if this was their last Christmas together.
On January 3 the former psychotherapist posted on her fundraising campaign page SaveSamantha.
She said: “This is the last haul. This surgery has been hailed a ‘lifetime fix’ by my surgeon in Arizona.
“We really are on the last haul now.
“A stable life and health is finally within reach but the peak of this mountain is going to be the hardest yet for us to overcome. I’m so very tired.”
Samantha was diag- nosed with Ehlers Danlos Syndrome (EDS-Type1) in January 2017 when neurosurgeons discovered the weight of her skull was causing her spine to collapse due to tissue weakness.
Samantha was later diagnosed with Craniocervical Instability (CCI), a secondary illness linked to EDS which means the ligaments in her neck are too weakened to support her head.
Soon, Samantha became wheelchair dependent and unable to be upright without agonising pain and memory loss. She was at risk of internal decapitation.
In September she had two operations in Washington aimed at stabilising the vertebrae in her neck but these did not go to plan.
She said the idea of returning to the UK and telling people the surgery was not successful “broke her”.
●●Samantha Smith, who has Ehlers Danlos Syndrome, with her children Jensen, eight, and Brooke, seven
●●Samantha’s spine is slowly being crushed by the weight of her skull
●●Surgery has so far been unable to stabilise her condition but there is a ‘lifetime fix’ in the USA