'Not knowing what's wrong with him makes it so much scarier': One mother shares her frustration at having a child with a nameless syndrome Jonah Norris, aged 6, is a SWAN (Syndrome Without A Name) child 6,000 British children are born each year with undiagnosable conditions Jonah is profoundly disabled - he can't walk or talk and has to be tube-fed Doctors have carried out endless tests but none have provided a diagnosis It is every new parent's worry that their child might be born with a serious medical condition. But 6,000 British parents each year are dealt the double blow of being told their child is not only very ill, but that doctors are limited in what they can do to help because they do not know what the problem is. This is the plight of families affected by SWAN or Syndrome Without A Name. Six-year-old Jonah Norris is one of the 40 per cent of disabled children in the UK who suffer with what doctors have termed as Syndrome Without a Name (SWAN) SWAN is not a condition or a diagnosis and it does not refer to one specific syndrome or condition. It is used as an umbrella term to describe all those conditions that medical experts do not understand. It is though that around 40 per cent of disabled children in the UK suffer with SWAN. Many SWAN children remain undiagnosed because it is highly likely that they have a very rare syndrome or condition. At six years old, Jonah Norris has only just reached the milestone of being able to sit up unsupported. He still cannot walk, talk or feed himself. Yet doctors are entirely unable to explain what is causing his assortment of seemingly unrelated symptoms. He has undergone a barrage of tests and not one has suggested that there is anything wrong with him. However, he is profoundly disabled, unable to speak or stand, and has to be fed through a tube directly into his stomach. For the first few months of Jonah's life his parents Hayley, 39, and her husband, Ben, believed their son had nothing more than clubfoot. However, at nine months old, a health visitor noticed that he was not able to sit up unsupported so referred him to a specialist for tests. He was seen by physiotherapists and underwent a range of genetic tests but all of them came back normal. Mrs Norris said: "As soon as we took him to the hospital they realised there was something severely wrong. However, they never had any idea what was wrong with him. Jonah's mother Hayley says that despite his serious disabilities he brings a huge amount of joy to the family and that he is full of energy and always laughing Nobody ever even suggested what it could be. All we know is that it is probably something genetic. She added: "We have now run out of things to test for." Jonah would not eat any solids until he was over a year old, he is dependent upon a wheelchair, and he is totally disinterested in food. Mrs Norris said: "His development is very delayed - he is behind his one-year-old sister. No one knows why he is not interested in food but he would not survive without his tube because he will not eat - at one point he went three years without putting on any weight. Mrs Norris, who is Jonah's full-time carer, explained what it is like to have a child with SWAN. SWAN - Syndrome Without a Name - is the term used to describe disabled children who are thought to have a genetic syndrome that doctors are unable to identify. About 50 per cent of children with learning disabilities, and 60 per cent of children with multiple congenital problems, do not have a definitive diagnosis. The parents of SWAN children often find their situation very isolating as no one is able to answer questions about their child's future. She said: "When you first find out your child is disabled you cling to the idea that it will be diagnosed - I pushed for lots of tests because I was desperate to know what was wrong, but the tests always came back normal. Some people worry that a diagnosis will be worse than not having one, but I think I would rather know because the fear of the unknown is worse than knowing what is going to happen. At least if I knew what the future holds for him I could prepare myself, but we are always having to second guess with him. She added: "It can be quite frustrating because we do not know why things are happening. If we had a diagnosis we would have an idea of the eventual outcome - I would like to know what the future holds, to have a label. Mrs Norris and her husband, an IT specialist at the BBC, also have an eight-year-old son, Reuben, and a 21-month-old daughter, Martha. They have a child minder who helps them care for Jonah so that they can dedicate time to their other children. Mrs Norris said: "I struggled a lot at the beginning, having to come to terms with having a disabled son. But my husband is fantastic - he helps out with the morning and evening routine. I think that having Jonah as a brother will make my other children much more caring adults. My oldest son just sees Jonah as a brother - it is as simple as that, he does not see him as disabled. Jonah brings a huge amount of joy to the family - he is a very happy child, he has a lot of energy and he is always laughing. He doesn't let his disability get in the way of having fun. He is an absolute delight and he is always making people laugh. Mrs Norris says that she has been given a huge amount of support by the charity SWAN UK which provides support to families with SWAN children. She said: "SWAN UK is just amazing - so many people are in the same position as us and to be able to talk to them is invaluable. You need that support to know that you are not on your own. Anne Harris, Director of Care Services for Rainbow Trust, a charity which also provides support to the families of children with life limiting disabilities and illnesses, including SWAN, said: "Having a sick child can be a very isolating experience and when your child does not have a definite diagnosis, that sense of isolation can be magnified greatly. There may not be other parents or families with whom you can identify, or share experiences, and other sources of support such as disease specific groups may not be available to you. "There are an increasing number of children living with complex health needs, many of whom may not have a "name" for their condition and who may have an increased need for support which is where organisations like Rainbow Trust Children's Charity, which support families with or without diagnosis, are invaluable." For more information about SWAN visit SWAN UK's website http://www.undiagnosed.org.uk/ For more information about the Rainbow Trust visit http://www.rainbowtrust.org.uk/