Connor Bradley used to like nothing better than being outdoors and playing with friends. But he is now confined to a wheelchair due to a neurological disorder. The 15-year-old has Freiderich's ataxia, which affects his co-ordination and balance and prevents him walking more than a few steps.
His mum, Rachel Bromley , said: "Connor is as cheeky – and as cute – as ever but it is a difficult age. He is at that stage where whatever your mother does, it's embarrassing and as his carer, I take him to school and pick him up."
When he was a toddler, Rachel said no-one realised what lay ahead for Connor.
She said: "He had an older sister and all was fine until was about six.
"His teachers noticed he couldn't skip and hop like the others.
"I took him to the doctor and the reflexes on his knees just did not respond."
There began a year of visits to one specialist after another.
Rachel, 41, said: "It was so frustrating not being able to find out what was wrong."
At last a blood test revealed ataxia – an incurable condition.
Rachel, from Whitwick, said: "We were called to the hospital in Boston, where we were living at the time, on a Sunday.
"Being called on a Sunday, you knew it was going to be bad.
"The doctor didn't seem to know very much either and gave us a piece of paper she had printed off the internet.
"As the day wore on, it began to start sinking in. I think I just cried.
"Connor was eight when he was finally diagnosed and the ataxia seemed to progress quite quickly.
"He got more and more tired and wobbly and is now confined to a wheelchair.
"Connor can't even stand up straight any more."
Despite the disability the teenager attends King Edward VII College, in Coalville, where he has a teaching assistant to help with his writing.
Rachel said: "Connor is quite isolated now.
"He enjoys playing games on his Xbox and watching things on You Tube.
"The other thing he loves is his Army stuff and will spend hours playing with that – although he would love nothing more than being out with his friends.
"At 15, too, he finds having his mum fussing around can be embarrassing."
One of the most difficult things has been learning to live each day as it comes.
Rachel said: "No-one can put pen to paper to say what is going to happen.
"Connor's eyesight, hearing or swallowing could be affected, we just don't know.
"What he does hate is when people stare at him."
In addition to the emotional side, the family is making do with accommodation until they can find a more suitable house.
Rachel said: "Connor can no longer get upstairs and we have converted the dining room into a bedroom.
"But there is no downstairs bathroom and I have to do all his washing in his bedroom.
"We had hoped to convert the garage, but the landlord has changed his mind and we are now waiting to find another, more suitable house.
"I hope talking about the condition will get more awareness out there.
"I have met a few families whose children are also affected and it is good to meet up and talk to them."
What is ataxia? Ataxia describes a group of brain disorders which affect balance, co-ordination and speech.
There are more than 50 types of ataxia which can be acquired or inherited.
It is caused by damage to part of the brain which controls co-ordination and balance.
Causes of acquired ataxia can include serious brain injury from a crash, viral infection, stroke or conditions such as multiple sclerosis and an under-active thyroid. Hereditary ataxia is caused by a faulty gene.
The most common symptoms are a loss of co-ordination and balance.
Symptoms of Friedreich's ataxia – the most common hereditary type – usually begin from about the age of eight.
They include a curving spine, thickening of the heart muscles and problems with hearing.
If a GP suspects a patient has ataxia they will refer them to a neurologist. Further tests may include an MRI scan or lumbar puncture.
If the ataxia is inherited, patients and their families will be offered genetic testing.
People with the condition will need a range of health professionals to look after them.
Doctors will range from a neurologist to heart and eye specialists as well as 'Condition affects one in 50,000 in Britain'
Dr Peter Critchley, is a consultant neurologist at Leicester Royal Infirmary.
He said: "It is estimated that Freidreich's ataxia, an inherited condition, affects one in 50,000 in Britain.
"It is also estimated there are 10,000 people at any one time affected by ataxia.
"This figure includes genetic causes, as well as those where the cause is identified, such as drinking excess alcohol, and those in whom the cause is not known - for example when it affects people over the age of 30."
Dr Critchley said there was no evidence to suggest that there had been any recent change in the numbers of patients seen with ataxia in Leicestershire.
He said: "However, the late onset cases may be diagnosed earlier than might have been the case when patients are seen in the monthly joint ear, nose and throat and neurology clinic in the Leicester balance centre at Leicester Royal Infirmary.
"Even though diagnosis may be made earlier in some cases, there are still no treatments or cures for ataxia."
Where to get help Ataxia UK provides help and support to patients and in addition raises money for research into the condition.
The charity can help with advice on benefit entitlement and provides a link to individuals affected by the condition who have set up their own websites.
It is also has a network of its own support groups, including one Leicester.
It meets quarterly at the Stage Motel, in Wigston.
The next event is Christmas lunch at 12.30pm on Wednesday.
For more information contact Claire Huggett on 0116 284 8201 or by e-mail
cmcj.hfam@yahoo.co.uk
The charity also runs a national phone helpline from Monday to Thursday, 10.30am to 2.30pm.
Phone 0845 644 0606.
People can e-mail@
helpline@ataxia.org.uk www.ataxia.org.uk/
Action for AT raises cash for research into a form of ataxia called ataxia-telangiectasia – an inherited form of the condition. For more information, e-mail:
info@actionforAT.org www.actionforat.org.uk
The AT Society is a charitable company which supports people with ataxia and raises money for research. Phone call 01582 760 733
www.atsociety.org.uk
![As a toddler, no-one realised what lay ahead for Connor...]( "As a toddler, no-one realised what lay ahead for Connor...")
