Jackson, born in April 2015, has spent most of his life in hospital. At 20 months old Jackson was first readmitted to hospital and since then he has not been home. He has spent over 16 months in hospital.
Over his short life time Jackson has developed a long list of symptoms including not being able to swallow, dysmotility of the stomach and bowel, Sensory Processing Disorder, Gastroesophageal Reflux Disease, and has an oxygen supply 24/7 because he regularly stops breathing. He is globally delayed and cannot communicate. Jackson has many symptoms but he has no diagnosis.
Jackson had been staying at the Great North Children’s Hospital (GNCH), not far from his home in Northumberland, where consultants searched for an accurate diagnosis for his condition. Jackson’s mum Debbie says, “A diagnosis would mean we could plan for the future. Having no diagnosis puts obstacles in our way. It means we cannot access appropriate support or funding from condition specific groups or charities.”
Jackson’s long stay in hospital has meant family life has revolved around his health. Erin, Jackson’s sister, has struggled with his long-term hospital stay. She says: “Life is hard. Jackson is in hospital all the time. It’s hard going there every day. I have to get up really early to get to school on time because it’s a long way from the hospital and when my dad was at work I used to sleep on the floor in hospital. Now I share a with Jackson in his big boy bed. I always stay by his side.”
At only eight years old, Erin has learnt about all of Jackson’s conditions and loves to teach him new things. “Erin is Jackson’s rock”, Debbie says. “Their bond is fantastic. She keeps him fighting on.
After six months of care at GNCH, Jackson’s medical team reach the difficult conclusion that they have done all they can do with the resources at GNCH. Debbie said “I was getting worried. The consultants at GNCH had been brilliant with Jackson but we knew they had exhausted all their options. We really didn’t know what the next step was.”
“It was so sad to see Erin start to get disheartened when the consultants progress started to slow down. She just kept saying to me ‘why don’t the doctors care?’ She just couldn’t understand why Jackson wasn’t getting better.”
Jackson’s consultants at GNCH had one last suggestion. They recommended that further neurological/gastroenterology investigations with specialists at Great Ormond Street Hospital (GOSH) could potentially provide more answers about Jackson’s condition. Finally there was hope. However, to travel the 300 mile journey to GOSH Jackson needed a plane transfer that would be able to support his fragile state. Arrangements were made and then fell apart on multiple occasions. Debbie said, “I felt like we were stuck just inches from the answers we needed for Jackson.”
In May 2018, Lucy Air Ambulance for Children (Lucy AAC) was contacted by the GNCH. They quickly made arrangements for Jackson’s transfer and within a week, Jackson was on a plane to GOSH. Debbie was relieved to hear the news. She said: “Once Lucy AAC had stepped in, the flight seemed to happen almost instantly. It meant so much to us and Erin saw it as a massive step forward – as did we.”
Jackson flew with his mum from Newcastle Airport to Northolt Airport, and was quickly transferred by road ambulance to GOSH. Within 30 minutes Jackson had moved from the plane to settling in in the Rainforest Ward at GOSH.
The experts at GOSH had two successful days of investigations before Jackson became too ill to continue. Debbie said: “Although Jackson has been really up and down whilst we’ve been here, I’m so glad the experts are able to see it happening. He’s been showing them all his tricks – his lips turning blue, his heart rate racing and then dropping really slow. They have had to postpone his investigations until next Thursday when he will hopefully be strong enough to have them again.
“We have 100% confidence in what the medical teams are doing for Jackson. He is without a doubt in the right place and for that we are so thankful to Lucy AAC for getting him here.”