Five-year-old boy who suffers from a condition that is so rare it doesn’t even have a name has ‘smashed every goal’
- Charlie Parkes is one of 6,000 children born every year in the UK with ‘SWAN’
- ‘Syndrome Without A Name’ has left him with bowel problems and autism
- After being told he would never walk or talk, Charlie is at a mainstream school
A five-year-old boy suffers from a mysterious condition that is so rare it does not even have a name.
Charlie Parkes’ parents first knew something was wrong when his mother Laura had a routine scan while pregnant.
The youngster, from Corby, Northamptonshire, is one of the 6,000 children born every year in the UK with SWAN – Syndrome Without A Name – which is thought to occur due to genetic abnormalities.
The mysterious condition forced Charlie to spend the first two years of his life in hospital, with him now battling bowel problems, anxiety, autism and allergies to name a few.
After being told he would never walk or talk, Charlie has ‘ripped up the medical textbook and rewritten his own’, and even attends a mainstream school.
Charlie Parkes (pictured as a baby) has a condition that is so rare it does not even have a name
The now five-year-old (pictured) was never expected to walk or talk due to the extent of his problems, which include bowel issues, anxiety, autism and allergies to name a few. But the youngster has defied all expectations and even attends a mainstream school
Charlie’s parents Laura and Steve Parkes (pictured with their son and seven-year-old daughter Chloe) claim they have lost friends who accuse them of making their son’s condition up
As soon as Charlie was born his parents were ‘thrust into this world of tube feeding and medicine schedules’, the BBC reported.
The severity of his illnesses meant he was cared for by up to 20 doctors at a time, with none really understanding the extent of his problems, Mrs Parkes claims.
After two years of tests, Charlie was well enough to come home but failed to hit the milestones expected of a baby, such as babbling or sitting up.
Rather than getting downhearted by their son’s poor progress, the parents were relieved he was still alive, with them regularly being required to to give him oxygen or call out ambulances.
As well as the aforementioned conditions, Charlie suffers from sensory processing information, hypermobility, a weak immune system, digestive issues and attachment disorder. Doctors also believe he may have problems with his connective tissue.
But on the surface Charlie seems like any other young boy, which makes his health problems even harder for the family to accept.
Mrs Parkes – who has suffered from mental health problems since her son was born – said: ‘We’ve been made to feel like it was our fault, even by medical professionals.’
‘We’ve lost family and friends, and have been accused of making up Charlie’s problems, because we don’t have a diagnosis people can just Google.’
The parents, who also have a seven-year-old daughter called Chloe, claim not knowing exactly what is wrong with their son has left them feeling isolated and unsure how best to care for him.
Charlie spent the first two years of his life in hospital (pictured) enduring multiple tests
Pictured are some of the medications Charlie has to take every day to manage his condition
Despite his poor prognosis, Charlie has defied all expectations by learning to walk and talk. He has also recently been able to hold a pencil.
‘He has smashed every goal and expectation anyone has ever had about him, he has ripped up the medical textbook and rewritten his own,’ Mrs Parkes said.
And the youngster endured every test, procedure and surgery with a ‘cheeky smile’, she added.
Charlie’s parents have also learnt how to control his erratic moods, whether that’s by giving him multiple baths a day or letting him play outside.
They are speaking out to raise awareness of the charity SWAN UK, which has its Undiagnosed Children’s Day today.
WHAT IS THE CONDITION SWAN?
SWAN – Syndrome Without A Name – is used to describe a person who is believed to have a genetic condition, however, the exact cause cannot be found.
It is thought to affect around 6,000 babies a year in the UK, of which half will never receive a diagnosis. Its US prevalence is unknown.
Some patients may be described as having global developmental delay, learning disabilities or physical difficulties.
Others have epilepsy, feeding difficulties, respiratory problems, poor muscle tone or joint issues.
SWAN occurs in cases where the condition is so rare it has never been seen before and therefore there are no tests for it.
It also occurs when a child’s symptoms are different to those of other youngsters who were thought to have the same disorder.
And it comes about when genetic tests reveal results that are not thought to be the cause of the symptoms.
Source: SWAN UK
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