THESE brave twins and their parents have endured more pain in a year than some people face in a lifetime.
Against the odds, little Orin and Olivia reached their first birthday to confound the expectations of doctors.
They both suffer from a rare debilitating condition called Pompe disease and require gruelling procedures to keep them alive.
Anxious parents Stephen and Lyndsay Arthur, 31, have lost count of how many times they have been told to say their final goodbyes.
The couple lived at the Shore in Leith for 14 years, with Lyndsay working as a teacher in Pirniehall Primary School and Stephen as a computer analyst at Ulster Bank in St Andrew Square.
But they were forced to give up their careers and move to Ronald McDonald house 11 months ago to be close to the twins as they receive lifesaving treatment at Yorkhill children’s hospital in Glasgow.
They are not asking for a miracle, just the chance to live a normal life with their children – and have made a heartfelt appeal to raise £200,000 for a specially-adapted home to allow the family to be together.
The couple launched their online GoFundMe appeal after being told the local authority could take up to three years to find them suitable accommodation.
Stephen said: “Reaching our target would mean we can actually go home. At the moment we have private rented accommodation but it’s not suitable for Olivia and she would never be released into it.
“Without the new home Olivia could be sitting in hospital for years. We are not looking for an easy life – just a normal one. We just want to get both our children to come home.”
The couple thanked the public for their generosity after their GoFundMe fundraising page managed to raise more than £20,000 in one week as donations flooded in from well-wishers across the world. But they will need ten times that to reach their target.
Olivia, who has had multiple crashes and cardiac arrests since she was born, now needs to be on a ventilator permanently to help her breathe.
But brother Orin seems to be amazing doctors and has been allowed out of intensive care.
Stephen added: “We were told he would not be vocal but now he is saying ‘mum’ over and over again.
“The consultants told us ‘He’s sat up but don’t expect anything more than that’. He’s got really bad muscle tone in his back and legs. But just today he pulled himself up to a standing position about three or four times. The first time it happened he nearly gave the nurses a heart attack.”
Olivia is also doing much better since she had a tracheostomy and has been placed on a ventilator.
“We were being told to say our goodbyes but now she’s a different child,” said Stephen.
“She’s active, playing with toys, whereas before it was a good day if she didn’t go blue and vomit.
“Her treatment has opened up a whole new world. Her pushchair has arrived, which was very exciting. We took her for the furthest she had been apart from when she was going to surgery. I think she believes the whole world has a ceiling.”
The specially adapted house would need to be on one level with wheelchair access throughout, while Olivia’s bedroom must be large enough to accommodate a nurse, a feeding pump, chair, ventilator and suction equipment.
The rooms may also require additional electrical adaption to accommodate all the equipment as it cannot be plugged into extensions, while there may also be storage requirements for oxygen cylinders.
The house will also need a wetroom for washing and must be suitable for the twins as they grow and need hoists.
Stephen added: “This is all, of course, based on Orin progressing and not degrading at all, but due to the progressive nature of Pompe it is pretty much inevitable that it will be all of the above times two in the near future.”
Stephen and Lyndsay now live their lives “day by day, moment by moment” around the hospital, spending all their time with their children.
The family carry out physiotherapy exercises with the twins to help improve their strength and mobility.
The couple met 14 years ago at a freshers event at Edinburgh University and immediately hit it off.
Stephen was studying computer security forensics while Lyndsay was studying psychology and sociology.
Stephen said: “We set up our GoFundMe page with the hope of raising enough funds to help us get a house to bring our twins home, to a safe and secure environment and all be together at last, after spending over a year in hospital.
“We also need to purchase an adapted car for when Olivia is discharged. Finally, we need help with day-to-day finances whilst still at hospital as we are unable to return to work at present and for the foreseeable future.
“Our situation has left us with no choice other than to put our careers on hold. We have annihilated what savings we had over the last 11 months, as living in the hospital environment is extremely expensive.
“As Pompe is a progressive and life-limiting disease, we have to plan that the situation will escalate as time progresses, so we will require a single level house that may have two chair-bound, ventilated children.”
Kelsea Little, Spokesperson for GoFundMe.com said: “The ‘Help get Orin and Olivia home’ GoFundMe campaign is incredibly inspiring. It’s amazing to see the support of friends, family and community who have rallied together to donate.
“We’re very happy to be able to provide a platform that might be able to assist the family at this difficult time.”
GoFundMe, the world’s most popular fundraising website, provides a platform for people to organise their own campaign to raise money for personal causes and life events and invite those in their community to support their fundraising.
To date, GoFundMe fundraisers have raised £815 million from 13M donors for a whole host of different causes from medical expenses, education costs, volunteer programmes, youth sports to funerals & memorials – even animals and pets.
• To donate, visit www.gofundme.com/helpOrinAndOlivia
POMPE disease is a disease which gets worse over time.
The progressive nature of it is a result of its underlying cause – the ongoing build-up of glycogen inside muscle cells.
As excess glycogen continues to accumulate, it interferes with normal cell function and causes continuous damage to cells, resulting in worsening muscle weakness that can affect movement, breathing and, in infants, heart function.
The condition is caused by the absence or deficiency of an enzyme called acid alpha-glucosidase but there are variations in the age at which symptoms appear, the muscles are affected and the speed of deterioration.