A Toton resident has started a crowdfunding page to raise awareness of Kleine Levin Syndrome (KLS).
Dana Prince’s son Connor, 13, was diagnosed seven years ago and the family have had little progress so far with help or advice about the condition.
“Connor is one of only a handful of children in the country with the condition,” Dana told the Beeston Local News.
“We have been referred to London who have one of two only two doctors in this country who can deal with this condition.
“Connor has had the condition for seven years and we are no further forward with help or advice and he is missing school, friendships and education.
“We have been to London once but have to go back for tests that could lead to medication being considered and could make his life a little easier than it is now.
“This is a very rare condition with only 1,000 suffers worldwide and finding people to help is so difficult.
“Connor can sleep for weeks and even months when in episodes and has memory loss and severe confusion.
“It is suspected that he also has Delayed Sleep Phase Disorder (DSPD), keeping him from sleeping through the nights and forcing him to sleep during the day.
“He is struggling to keep up with schoolwork and missing out on seeing and going out with friends.
“KLS is incurable and very little is known about it. Medication is hit and miss and what works for one person may not work for another.
“The DSPD is easier to treat but must be confirmed first with more tests.
“Connor has missed out on many Christmas Days, birthdays, school trips, family holidays and other special occasions because of this condition and has little memory of growing up because of his long episodes and odd sleeping patterns.
“We desperately want to provide him with a better quality of life moving forward and to help him back to school to improve his chances of a good education.
“Connor is a funny and bright teenager with a great sense of humour, who deals with this condition in a very grown up and mature way.”
If you can help with support for Connor visit the JustGiving page at