A Scottish schoolgirl born with a rare genetic illness has been saved from paralysis thanks to a hero Edinburgh medic.
Elise, eight, spent three weeks in the Edinburgh Sick Kids after a rare genetic condition saw her rushed in for surgery when her spine became deformed.
She was born with congenital scoliosis and kyphosis which is when the bones in the spine fail to form properly in the womb. Throughout her young life, she has undergone tough surgery’s to straighten her spine and will face more as she gets older.
Dad Richard, 47, his wife Kirsty, 44, and big sister Catriona, 14, live in Dundee, but due to the nature of Elise’s condition, she has always been treated at the Edinburgh Sick Kids Hospital, old and new.
Speaking to Edinburgh Live her dad said: "Elise suffers from congenital scoliosis and kyphosis, twisting of her spine which has been caused by a genetic fault, a deletion of part of chromosome 16.
"Initially, this led to her being born with an extra half vertebra in her back, along with deformities to some of her other vertebrae. When she was two she underwent extensive surgery at the old Sick Kids hospital to remove the hemivertebra and fuse some of her other ones.
"While this did work, it led to two further emergency surgeries to deal with a bad infection and a problem with some of the metalwork that was inserted. Eventually, two years later, she had a fourth operation - which was planned this time - to remove the remaining metalwork."
He continued: "The time spent away from nursery when she was little led to her needing to delay starting school, so she went to school a year late.
"As it happens, she’s the oldest in her class and by a distance but still the smallest! Fortunately, this hasn’t been a problem, and she’s doing well at school."
The family spent nearly three weeks in Edinburgh at the start of the year following Elise’s major spinal surgery on January 17. It saw a hero surgeon carry out a complex procedure that involved moving some organs to fix her spine. Without the operation, the youngster would have been paralysed.
Elise's dad explained: "As she’s grown, unfortunately, her spine has deformed again, leading to a severe kyphosis, a forward bend, which has required further surgery.
"This time, the surgery has been extremely invasive and complicated. It’s difficult to describe, but basically, the work had to be done to the front of her spine rather than the back.
"So the surgeon, Thanos Tsirikos, had to go in through her side, removed two of her ribs, move all her organs out of the way and build a scaffolding out of the removed bones to support the weakness in her spine and prevent it from bending further.
"There was also a bit more work done at the back of her spine, so she has two large wounds, one right round her side and another straight down her back. Hopefully, she won’t need any more surgery for a long time, but it can’t be ruled out."
Throughout the youngster's life, she has spent a lot of time in the Sick Kids getting gruelling and complex operations to straighten her spine which has impacted the whole family.
Richard explained: "Needless to say, all of this, both six years ago and now, has had a big effect on us, with a lot of disruption and stress as you can imagine. Elise’s big sister Catriona is six years older than her, and she really struggled with things initially.
"She is 14 now and better able to deal with it all but she still finds it stressful and upsetting.
"Elise herself deals with it quite well. What has been great this time round is that her class at school all made her get well soon and birthday cards and the school made a couple of videos from her friends which they sent to us.
"She misses her pals but this has really helped, and we’re hoping she can go back to school in a few weeks' time - although it will need to be carefully managed."
Little Elise has spent time both at the old Sick Kids in Marchmont and the new hospital at Little France, and have nothing but praise for the hospital staff and charities on hand to support them.
Richard continued: "You don’t need me to tell you that everyone at the hospital is absolutely wonderful.
"We’ve had great help and support from everyone at Crichton, CCU, and Tantallon, Dunvegan wards, and especially the guys at Ronald McDonald House. The nurses and play specialists on the wards are brilliant and can’t do enough to help.
"We’ve had lots of help from the Edinburgh Children’s Hospital charity, both directly and indirectly. Kirsty and myself spent the afternoon at The Hub on the day of Elise’s surgery as we wanted to be nearby but needed to be someplace calming.
"It was brilliant. The girls looked after us and we even got involved in the visit from Dynamic Earth that afternoon!"
He added: "When Elise was recovering and allowed out of the ward we took her down there a few times, both for a change of scenery and also to take part in the activities that were on. She had a fantastic time and it totally lifted her up when she was getting bored.
"One thing that has really helped us is the charity’s youth group on a Monday. Catriona started taking part in this when it was held virtually during lockdown, and we occasionally manage for her to come through in person on a Monday when circumstances allow.
"While Elise was in the hospital, Catriona came through and stayed with us, and stayed until Tuesdays so she could go to the group on Monday nights. She really gets a lot out of it, and in particular, it was a fantastic support for her while her sister was in the hospital.
"We’ve benefited indirectly too - from the shop, the play materials on the wards, even things like the spaces provided for parents - every day I sat and ate lunch at the wee “breakfast bar” beside the shop on the ground floor, I loved it there!"
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Elise hopes to return to school when she can to be with her friends but the family will be forever grateful for the help of the hospital staff.
He said: "Any hospital stay or major surgery is stressful and upsetting, but everyone has been so good to us that it’s difficult to express how grateful we are for all the help we’ve received.
"As you know, I try and take part in some of the fundraising events for the ECHC to try and “pay something back” so to speak, but that doesn’t even scratch the surface."
Richard plans to do more in the future for the charities involved in the Sick Kids and wants to highlight how incredible the staff are working tirelessly for young people in Edinburgh. You can find out more about the organisations at the Sicks kids here.
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