Jackson
Jacksonβs big step forward
Jacksonβs big step forward
Newcastle > London
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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,Β 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 Childrenβs Hospital (GNCH), not far from his home in Northumberland, where consultants searched for an accurate diagnosis for his condition. Jacksonβs mum Debbie says,
βA 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.β
Life in hospital
Jacksonβs long stay in hospital has meant family life has revolved around his health. Erin, Jacksonβs sister, has struggled with his long-term hospital stay. She says:
βLife is hard. Jackson is in hospital all the time. Itβs hard going there every day. I have to get up really early to get to school on time because itβs 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.β
At only eight years old, Erin has learnt about all of Jacksonβs conditions and loves to teach him new things. βErin is Jacksonβs rockβ, Debbie says. βTheir bond is fantastic. She keeps him fighting on.
After six months of care at GNCH, Jacksonβs medical team reach the difficult conclusion that they have done all they can do with the resources at GNCH.Β Debbie said:
βI was getting worried. The consultants at GNCH had been brilliant with Jackson but we knew they had exhausted all their options. We really didnβt know what the next step was.
βIt was so sad to see Erin start to get disheartened when the consultants progress started to slow down. She just kept saying to me βwhy donβt the doctors care?β She just couldnβt understand why Jackson wasnβt getting better.β
One last suggestion
Jacksonβs 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 Jacksonβs 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, βI felt like we were stuck just inches from the answers we needed for Jackson.β
Jackson's Lucy AAC transfer
In May 2018, Lucy Air Ambulance for Children (Lucy AAC) was contacted by the GNCH. They quickly made arrangements for Jacksonβs transfer and within a week, Jackson was on a plane to GOSH. Debbie was relieved to hear the news. She said:
βOnce 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 β as did we.β
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:
βAlthough Jackson has been really up and down whilst weβve been here, Iβm so glad the experts are able to see it happening. Heβs been showing them all his tricks β 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.
βWe 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.β
Home from hospital
After 588 days (nearly half his life), Jackson was discharged home and is now learning all about the big world around him. Debbie says:
βIf someone were to ask me to sum up Lucy Air Ambulance for Children, I would say LIFE SAVING. After 21 months as an inpatient we were finally allowed to bring Jackson home. Without a doubt, this would not have been possible without Lucy AACβs intervention. They saved my sonβs life and gave me my family back. The continued support that we get from Lucy AAC continues to surprise us. The Lucy AAC team have genuine compassion for the families they support. We will forever be thankful to Lucy AAC.β
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