‘I don’t want my child to go through what I have’

Rochdale Observer - - FRONT PAGE - Da­mon.wilkin­son@men-news.co.uk @Da­monWilkin­son6

AMUM bat­tling a rare con­di­tion which means her spine is be­ing crushed by her own skull has re­vealed the heart­break­ing news one of her chil­dren has the same ill­ness.

Sa­man­tha Smith suf­fers from Eh­lers Dan­los syn­drome, which weak­ens the body’s con­nec­tive tis­sues caus­ing pain, dis­lo­ca­tions and car­diac ab­nor­mal­i­ties.

The mum-of-two, 30, has re­cently re­turned from Wash­ing­ton in the USA af­ter a mas­sive cam­paign raised £150,000 to pay for life-sav­ing surgery.

But the two op­er­a­tions, which were car­ried out by one of the world’s lead­ing EDS spe­cial­ists and aimed to sta­b­lise the ver­te­brae in her neck, didn’t go ex­actly to plan - and Sa­man­tha fears she will al­most cer­tainly have to go un­der the knife again.

And the for­mer psy­chother­a­pist, of Smithy Bridge, has also told how one of her two chil­dren, Jensen, eight, and Brooke, seven, has the same hered­i­tary con­di­tion.

Sa­man­tha, who says she suf­fers about 50 dis­lo­cated joints per day, is now cam­paign­ing for greater aware­ness of the con­di­tion within the med­i­cal pro­fes­sion so her chil­dren ‘do not have to go through what I have gone through.’

She said: “With­out a doubt one of my chil­dren has EDS. They have started re­hab al­ready.

“I do not want them to get to my age and have to go through what I have gone through.

“All the treat­ment I have had and need is pri­vate and a lot of the spe­cial­ists are in Europe or Amer­ica, but there is no rea­son why the treat­ment should not be avail­able here in the UK.

“The only thing that is push­ing me to keep go­ing is the knowl­edge that if I don’t chal­lenge the sys­tem no­body else will.

“I have the con­tacts and sup­port to do it so I am go­ing to give it my best shot.”

Sa­man­tha has spent a life­time in pain, but it was only when she was preg­nant with Jensen that she started to think some­thing was se­ri­ously wrong.

But it still took her al­most 10 years to get a di­ag­no­sis of EDS.

The ge­netic con­di­tion af­fects just one in 5,000 peo­ple in the UK, and its ter­ri­fy­ing symp­toms in­clude tem­po­rary paral­y­sis and tem­po­rary loss of sight and hear­ing.

Sa­man­tha now needs to raise about £50,000 to pay for the sec­ond, un­ex­pected, bout of surgery she had in Amer­ica plus up to an­other £100,000 for tests and po­ten­tial fu­ture surgery to sta­bilise her neck and get to the bot­tom of what is caus­ing the prob­lems.

She added: “We are back to square one in terms of fundrais­ing.

“I need to find a sur­geon that has an un­der­stand­ing of my con­di­tion and is also a hor­mone spe­cial­ist be­cause it ap­pears the root of my prob­lems is hor­monal.

“I have been on au­topi­lot for so long now I have had to push to get the an­swers. I have had to do a lot of things I did not want to do.

“I had it my head that I would go to Amer­ica, have the surgery, come back home and go back to work - but that plan is out of the win­dow now.

“I’m not as in­de­pen­dent as I would have liked. Emo­tion­ally I am at rock bot­tom. I’m start­ing all over again and that was not the plan.”

For de­tails on how to do­nate and for in­for­ma­tion about up­com­ing fundrais­ing visit the Save Sa­man­tha page on Face­book.

●●Sa­man­tha Smith walk­ing af­ter the first round of surgery in Amer­ica (in­set)

●●Sa­man­tha Smith with her chil­dren Jensen, eight, and Brooke, seven – one of whom has her hered­i­tary con­di­tion

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.