Family aims for �10,000 thank you for hospice
Toddler Jackson Robinson's medical condition is so rare that his parents do not know what the future holds for their youngest son.
But what Karen and Paul Robinson do know is that the support they have had from the Quidenham hospice run by East Anglia's Children's Hospices (Each) has helped their family enormously during the past 14 months.
Now the Sprowston couple and their wider family are planning a year's worth of fundraising events in a bid to raise a �10,000 thank you for the charity and are appealing for people to support their efforts.
The first few months of 14-month-old Jackson's life were an 'emotional rollercoaster' for the Robinson family, who live in Foxburrow Road. With two other children, Poppy-Mae, six, and Blake, four, Karen knew that her newborn child's constant screaming for 20 hours a day and particularly after feeds was not normal.
Over several months tests were carried out, but no one could find out what was wrong. Despite being born weighing 7lb 3oz, Jackson simply was not gaining any weight and when he was a four-month-old weighing just 9lbs, he had to be admitted to the Norfolk and Norwich University Hospital.
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Karen, who is a staff nurse in the acute medical unit at the hospital, said: 'We had been testing for everything, but everything came back normal. While most people would say that is good, it did meant that we couldn't find out what was wrong.'
Eventually doctors diagnosed autoimmune enteropathy, a very rare condition that occurs when the body's own immune system attacks the intestinal wall and affects the way it absorbs.
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It is so rare that to date, the Robinsons have no contact with anyone in this country who has the condition and have only discovered three girls who have it in America.
Jackson, who at 14 months is still wearing trousers made for children aged 0 to three months because of his size, is now fed through a tube for 20 hours a day, and because he is crawling this means constant supervision so he does not pull out the tube.
Karen, 31, and Paul, 32, who is self-employed and runs Sprowston Scaffolding, have a family support worker who enables them to talk about their thoughts and feelings, especially if they are feeling frustrated by lack of information regarding Jackson's condition.
The couple said: 'Our older children also have a child-led family support practitioner which they have found particularly helpful, as they have the freedom and opportunity to speak as they feel without the consequence of upsetting anyone.'
There are also the nurses who have cared for Jackson at the hospice and at home.
The Robinsons said: 'The nursing care gives us a little respite from his care and enables us to spend quality time with Poppy-Mae, Blake and each other. It also allows the opportunity to carry out housework, shopping and all the other chores that are difficult to do when Jackson is around.'
Karen's mum, Wendy Alcock, kick-started the fundraising idea by setting herself the challenge of doing a skydive for her 60th birthday next year, while various other members of the family are organising events such as a quiz and chips night, a ball, and a 60s disco.
Jackson's brother and sister, as well as cousins Owen Gibbs, three, Hope Dickens, 10, Robert Dickens, 12, and Bethany Dickens, 16, will be taking part in a sponsored swim at Bannatyne's Health Club, Northside Road, Thorpe St Andrew, on Sunday, November 7, at 8.30am.
Sponsor forms are available from the health club and more information about upcoming events and JAckson is available online at www.jacksonrobinsonfund.co.uk.
People can also donate online at www.justgiving.com/Jackson-Robinson-Fund.
Do you have a story about why you want to help a charity? Contact reporter Kim Briscoe on 01603 772419 or email firstname.lastname@example.org.