Quinns' Story
“Our entire world stopped when Quinns (7) became unwell.
“He was caught in a dystonic crisis – extreme involuntary movements – and nothing was working to break him out of it. He ended up in hospital, heavily sedated and on a ventilator to keep him breathing.
“He spent a month in Critical Care at the RHCYP before being transferred to Evelina London Children’s Hospital for Deep Brain Stimulation – a procedure usually used to treat Parkinson’s. There, his original diagnosis of Cerebral Palsy was changed to a very rare genetic condition called GNA01.
“The surgery saved his life. It broke him out of his crisis, but his lungs were left very weak. He returned to Edinburgh at the beginning of January to continue his recovery closer to home
When Quinns was no longer in Critical Care, he really enjoyed visits to his bedside. He would laugh while Tricky Ricky made him a balloon animal and would surprise the musicians with his request for Thunderstruck by AC/DC. They always delivered!
Jennifer, Quinns' mum
“The impact on him has been enormous. He has been very poorly and spent a huge amount of time in bed. He has missed more than six months of school, as well as all his hobbies such as drama class and Beavers. He has missed all his friends and they have missed him.
“ECHC was hugely important for all of us throughout this journey. Initially it was Quinns’ sister, Anita (12) who really benefitted. She was supported by both the Hub and the Youth Work team. It was so important to give her some positive memories of the time Quinns was spending in hospital. She would do crafts and have a laugh with the staff while I had a cup of tea and a break from it all.
“Eventually, he was able to visit the Hub where he was entertained with crafts, stories, and even a little bit of Mario Kart. He enjoyed making a rocket lantern and then seeing it along with all the others at a Glow party.
“After five ambulance rides, two air ambulance flights and four admissions across three hospitals, Quinns finally rang the bell to signal his discharge from hospital 171 days after admission.
“We are slowly getting back to ‘normal’. He will always need a huge amount of support but he is gradually returning to school and his other activities. He will have hospital appointments but hopefully no more long hospital stays.
“He has been through a lot these last few months, but he’s come out the other side the same smiley happy boy we all know and love.”
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