Des­per­ate race to save mum’s life

Rochdale Observer - - PLANS IN THE PIPELINE - Rochdale [email protected]­ @RochdaleNews

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

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