‘I told mummy that I’m not scared of death anymore’
Tuesday, 3 June 2014
TWO years ago, Séanín Smith had the world at her feet.
The pretty University of Ulster student was in the middle of a work placement in Daisy Hill Hospital, had just qualified as a lifeguard and was a seasoned performer with the Sheridan Stage School.
However, an horrific 24 months has torn the Belleeks woman's world apart.
Suffering from an incurable condition known as Ehlers Danlos Syndrome (EDS), doctors and consultants are at a loss as how to treat Séanín's rare and debilitating illness.
Now the 22-year-old's family are growing increasingly concerned for Séanín's immediate wellbeing as they watched her health deteriorate rapidly in the last five months, leaving the once exercise-mad student in a wheelchair and in constant pain following a series of strokes, seizures and comas.
“I feel terrible every single day," said Séanín.
“I suffer from migraines every day. I find it hard to eat. My bowel doesn't work and my bladder isn't working because of the stroke. I just never have any energy at all. Some days my legs just won't work at all so I need a wheelchair."
From a young age, Séanín suffered minor health problems and when she was 14 she was diagnosed with Hypermobility Syndrome, which affects the body's joints.
When she turned 18, Séanín was diagnosed with Ehlers Danlos Syndrome (EDS), a collective of inherited conditions that affects connective tissues that support skin, tendons, ligaments, blood vessels, internal organs and bones.
In early 2012 she lost the central vision in her right eye and was diagnosed with Macular Degeneration, a condition that affects sight and usually affects people over 60.
However, undeterred and relishing her new life at university in Coleraine, Séanín took everything in her stride and landed a work placement in the Dietetics Department at Daisy Hill Hospital, where she also volunteered on the Stroke Ward.
But over the summer and just weeks into her placement, Séanín knew something was wrong.
She started taking seizures and a few days before she represented Belleeks in the Belle of South Armagh competition, she suffered a mini-stroke and was rushed to hospital.
She got out in time to attend the beauty pageant, but hours after it was over, Séanín took a major stroke and spent the following two weeks in the Royal Victoria Hospital in Belfast.
“It was such a quick deterioration," said Séanín's mum, Mary.
“Four hours after the Belle of Armagh, she was taken into hospital where she was constantly seizuring. After a few days doctors thought it was a major rupture on the brain.
“She was given tablets to treat it but she kept taking blackouts. She would just go out, maybe for 10 minutes each time, and come back. Doctors didn't know what was going on; she was showing signs of different neurological problems."
Séanín suffered another major setback in January 2013 when she had another major stroke and, for the second time in just five months, had to learn how to walk again.
The family were back and forth to consultants at various hospitals as they tried to identify what exactly was going on with Séanín, but with little success.
Her awful luck continued throughout 2013; her kidneys and bladder became under active due to the strokes and she was diagnosed with Old Scheurmann's Disease.
However, while Séanín and her family coped with the steady stream of setbacks, the last five months have seen Séanín's health deteriorate rapidly. In January this year she was rushed to Craigavon Area Hospital after slipping into a coma.
In March she suffered another mini-stroke, and in April she was back in hospital after suffering seizure and stroke. Doctors are also now testing her for an extremely rare genetic condition that affects elastin in the body called Pseudoxanthoma Elastium (PXE).
The frequency and severity of these recent setbacks have forced the family to abandon previous medical advice that Séanín should not fly and to seek oversees, expert medical attention for their daughter after exhausting all avenues here.
“There's nobody doing any research for us, we're doing everything ourselves," said Mary.
“From 2012 Séanín hasn't been allowed to fly because of her condition. But over the last five months she has been in and out of Daisy Hill, Craigavon and the Royal and we need to act. The last time I spoke to her neurologist I asked him 'what is the risk of flying now' and he said 'what is the risk of not going now'.
“It has got to that stage. We need to find someone to help us."
The family have identified consultants in Belgium and America, but have been unable to act due to recommendations that Séanín shouldn't fly and the lengthy wait for biopsy results.
Now Séanín and her family must wait patiently in the hope of receiving positive news.
But, despite a grueling five months of pain and uncertainty, Séanín remains positive,
“I stay really positive because I still have a lot of stuff I want to do," she said. "I want to go back to university and I will get back to university to finish my degree and go on to do my Masters. I have so many things that I want to do. One day I want to be Health Minister! I have plenty of experience of hospitals!"
Séanín celebrated her 22nd birthday on Thursday, but she hasn't been able to live her life the way a 22-year-old girl should, although her two-year relationship with boyfriend Martin Rooney brings some normality to her life.
She said: "I never think 'why me?' because if I wished that then someone else would have it and I wouldn't want anyone else to have this."
The former Our Lady's pupil is well aware of the seriousness of her condition and how quickly her health has deteriorated in recent months.
She also knows that she needs overseas expert help as soon as possible and, with the strokes and seizures showing no signs of abating and her fragile body taking more time to heal each time, Séanín knows her future is uncertain.
“I'm not scared," she said. "I don't know what's going to happen in the future. No one really knows. The doctors don't know so I just take it day-by-day.
“But I'm not scared. I told mummy that I'm not scared of death any more because I've gone through so many near-death experiences.
“I think it's more scary for mummy and daddy and the family because I think they've seen more than what I've really seen."
Indeed, watching Séanín becoming weaker and weaker, day-by-day, is excruciating for mum Mary, dad Louis and her sisters Louise and Tara.
But, like Séanín, they have pledged to stay strong and keep fighting on.
Mary said: "It's very hard. I try to keep positive and try to not get upset. I want to be with Séanín all the time. If she goes into hospital for two days or 10 days, I'm with her by her side.
“If I was to break down, they wouldn't want me there, so I try not to get upset although you want to at times. But it's hard. They're putting needles in her and doing tests on her. She's had that many needles inserted into her arms that her veins are collapsing and it leads to infections in the arms.
“She has just gone through so much. They don't know what's actually going on with Séanín and they're saying to me she's different and she's unique, but that's no good to me because I'm wondering is she's going survive or not. It's really scary stuff."
Her family's support has been matched by that of the Belleeks community and surrounding areas.
Hundreds of people have supported the Fight On Campaign with various fundraising drives including a tractor run, 10k race, cake sales.
The money raised is for travel, accommodation and medical costs once the family get the green light to travel overseas to see specialists.
“As soon as we get the information, we are ready to go," said Mary. "That's where we are at the minute because Séanín's health has really deteriorated since January.
“We don't know how much we need or where we need to go. They took Séanín's biopsy in February 2013 and told us it would take six months for the results to come back but it took a year.
“In February this year then they were testing Séanín about the PXE and that result could take six months to a year, but we don't have that time, so now we're researching and see if we can get a biopsy done privately for all the diseases and then we'll know where we have to go for treatment."
Séanín said she has been overwhelmed with the messages of support from everyone, including stars from the ITV soap Emmerdale who were bowled over by Séanín's infectious smile and courage at Friday night's Sprit of Northern Ireland Awards where she was awarded the Overcoming Adversity Award.
“It's overwhelming," added Séanín. "People are so generous. My sister Louise and my mummy went to an EDS conference and came back and wanted to start up a fundraiser.
“I was iffy about it because at first I didn't want anyone to know about my illness. There's been great support and it's raising awareness about EDS, which is fantastic."
Mum Mary says the next few months are now critical.
“We just take it day-by-day," she added. "We have to make sure we done everything possible."
To show your support for Séanín our for donations or medical advice, contact the Fight on Campaign on facebook.
Séanín's appearance on The Spirit of NI Awards will be screened on UTV tomorrow night.
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