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Stoneham boy lives with sleep problem

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Posted: Tuesday, February 12, 2013 12:04 pm

In today’s hectic, fast-paced world, many people struggle to get the required eight hours of sleep each night. Some get by with just half that thanks to work, kids and other commitments. For one young boy in Stoneham, getting eight hours of sleep isn’t a problem. The problem arises when it’s time to wake up, because many times he can’t.

Connor Dirks has what is known as KLS (Kleine-Levin Syndrome). It’s a rare and complex neurological disease that causes him to sleep for hours at a time while affecting his behavior. The 13-year old Stoneham boy can sleep for upwards of 26 hours before waking up.

His mother, Erin, said that when he gets tired she knows it’s time to get him into bed. There’s no waking him up, either, she said, though she has admitted to getting him up for sips of water at times.

When he sleeps, his head goes back, he gets very white and his breathing becomes shallow. She said it’s completely different from normal sleep.

Unfortunately, the disease has affected his health. Before, he was a normal boy who played sports. Now, his mother said, he’s very thin and pale. Thankfully, playing sports gave him more of an athletic build and muscle tone that’s helped him over the past few months as the disease has taken hold.

How it began

According to his mother, Connor had been sick off-and-on since March of 2011. The family thought he had mononucleosis, a common viral illness (known as the “kissing disease”). Prior to him first getting sick, his mother said he was very energetic.

Connor was a typical young boy, “very silly and goofy” his mother said. While some parents might think their kid was just lazy, his mother knew something was wrong, because “lazy was the exact opposite of who Connor was.”

Once the family realized something was going on, they took him to a specialist at Tufts Medical Center for testing. They performed sleep studies, but all the tests came back negative.

At this point, Connor’s mother was getting frustrated. Not knowing what else to do, she posted on Facebook a message about Connor constantly sleeping. Fortunately, in what has to be something of a miracle, as the disease is so rare that approximately 1,000 people have been diagnosed with it, another mother from Stoneham whose son also has KLS responded to Erin’s Facebook post suggesting she see a neurologist.

With things looking up, the Dirks family went to Boston Medical Center for an MRI. During the procedure, Connor actually fell asleep. Though the doctors were worried, his mother assured them that it happens all the time.

Since August of last year, Connor has dealt with these sleeping episodes. Typically, he can go a couple of days between episodes. The longest he’s gone is seven days.

Fortunately, his mother said, he’ll outgrow the disease. However, it might not be for 10-12 more years meaning that he’ll miss out on many rites of passage for a teenage boy including getting his driver’s license.

His mother hasn’t brought that up yet, as stress can contribute to his condition. She said she wants to focus on now and not worry about the future.

How he lives

Connor tries to live life like any ordinary child. He’s been to school 18 times this year. Thankfully, the school has worked with the family to allow Connor to show up when he’s able. When he’s home he has the help of a tutor, though at times he’s fallen asleep during his session.

He works out when he can, his mother said. She tries to get him to exercise when he’s awake. Unfortunately, his awake periods don’t always last long, which has contributed to his thin frame and pale skin.

Connor tends to eat at weird hours, sometimes in the middle of the night. Many times, the 13-year old is awake when everybody else in the house is asleep. His mother said he’ll watch TV or find other ways to entertain himself.

One thing he misses is sports. Connor had made the AAU baseball team prior to developing the illness, but had to drop out once KLS set in. He also doesn’t get to many sporting events, either.

Though it seems like a hard life - constantly sleeping, missing out on time with friends - his mother said he takes it as it comes. Though, it does get to him some days.

“I just want to get better,” he’d tell his mother.

Connor has been fortunate to have great friends and a great support system. His biggest fan might be his sister who’s a senior at Stoneham High School. His mother said they’re really close and she enjoyed attending his hockey games.

Since the disease is so rare, very little is known about it. In that regard, Connor’s mother has decided on a holistic approach to battling the illness. He takes 25 vitamins every day, which his mother said have helped.

He just started a gluten free diet, his mother said. It’s also been suggested by his doctor that he start aerobics to help the endorphins fire.

How KLS affects lives

According to the KLS Foundation website (, the cause of KLS is not known. What is known is how badly it can affect those who suffer from it and their loved ones.

As his mother points out, when awake Connor can appear “spacey” or out of it. Sometimes he does things, then forgets he did them. Other times, he appears irritable, especially when overwhelmed by visitors.

A personality change that could happen, though hasn’t yet, is hypersexuality. Connor’s mother said she’s not looking forward to that if it takes effect.

The worst part about KLS may be what could happen, i.e. the KLS Foundation says that “affected individuals may go for weeks, months, even years without experiencing any symptoms, and then they reappear with little warning.

“In between episodes those diagnosed with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. However, they function daily with the frightful reality that they could become sick again at any moment. KLS episodes may continue to reoccur for a decade or longer with devastating effects on the adolescent’s life and family.”

While on the outside KLS may look like any other sleep disorder, it is vastly different. As Connor’s mother mentioned, waking someone up during an episode can have unintended consequences. It may cause the person to suffer halluincations. She said that one time Connor thought his parents were trying to kill him.

Although the disease is serious, it can offer moments of levity. One time while out in the backyard with his puppy, Connor had fallen asleep. When his mother looked out the window and saw Connor, still holding the leash, being dragged along the ground by the dog, she couldn’t help but laugh.


KLS does not come cheap. Thanks to a number of tests, many not covered by the family’s insurance including a DNA test, the family’s finances have been drained. Therefore, a “Night of Inspiration” will be held on March 7 at the Faith Quest Community Church, 50 Central St., Stoneham, from 7 - 9 p.m. There is a $20 suggested donation with 100 percent of the proceeds going to Connor’s medical bills.

For those not able to attend the event, but who would like to support Connor and his family, there are two ways to help:

• A benefit fund has been established. Donations can be mailed to: Connor Dirks Benefit Fund, c/o: StonehamBank, 80 Montvale Ave, Stoneham, MA 02180

• Raffle items can be donated by contacting Caroline Colarusso at 781-279-1197 or by e-mail at

According to his mother, Connor will most likely not be attending the event.

For a boy who at one time played six sports, now sleeping through most of the day can only be described as a jarring transition.

© 2015 All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

  • Discuss

Welcome to the discussion.


  • ChristinaRicker posted at 5:23 am on Mon, Jul 20, 2015.

    ChristinaRicker Posts: 1

    For every human eight hours sleep will be sound enough and will keep healthy and energetic. Any thing more than that will lead to laziness and less than that will make the body weak. This was proved by many dissertation writing companies long back. Even some kids like stoneham boy are facing problems with insufficient sleep errors.

  • benjohnson posted at 1:15 pm on Mon, Apr 20, 2015.

    benjohnson Posts: 1

    I am very sad to hear about this information and I think it will be cured after giving proper treatments. So I hope this child’s parents have the bold mind to help their child to overcome from this disease. I will definitely pray for him.

    Electronic health record specialist

  • marvinvinn posted at 3:44 am on Wed, Jan 21, 2015.

    marvinvinn Posts: 61

    Each family has a different method of raising their children. Some people prefer to buy punk baby clothes at, a crib, pampers before the baby is born and others don't stress too much about these issues, because most of the time they receive them as a donation. It doesn't matter how someone makes his plans, what really matters is the education that the child will receive.

  • David Majors posted at 6:19 am on Tue, Jan 20, 2015.

    David Majors Posts: 124

    It is indeed a rare disease and those who are suffering from it could find more info here about the problem. However, the boy’s parents should not lose hope at all, they have to support their son and help him recover from this disease.

  • Patrick Carlson posted at 5:25 am on Wed, Jan 14, 2015.

    Patrick Carlson Posts: 90

    The parents are very courageous and they are doing their best to support the boy in his fight against this disease. However, usually most people suffer from lack of sleep which is known as insomnia, while there are few who can not sleep well because of teeth grinding problem, for this they can use Nightguards which are available at

  • Linda Herrington posted at 6:07 am on Fri, Jan 9, 2015.

    Linda Herrington Posts: 93

    The boy is indeed going through a complicated health problem, however, if he could be given proper medical care then he would be able to overcome this issue soon. Usually people complain about lack of sleep, sometimes due to snoring they fail to get good sleep. If you have such problem then you should immediately contact a good healthcare center that offers sleep apnea treatment Palm Harbor and in other areas.

  • David Majors posted at 3:32 am on Thu, Jan 8, 2015.

    David Majors Posts: 124

    The boy indeed is going through a serious problem, hopefully they would be able to raise sufficient funds. Most people usually suffer from problems like lack of sleep or Obstructive Sleep Apnea (OSA). There are treatment facilities around like Werrin, Gruendel & Boles which offer solutions for such problem, you can find out more about this treatment center at

  • daniell17 posted at 5:28 am on Tue, Jan 6, 2015.

    daniell17 Posts: 36

    This boy won't have a happy childhood, but their parents should do their best to offer him new experiences, to make him happy and to forget for a while his sickness. There are some great activities at, which can be done by everyone, therefore, if you have time, you should visit this recreational center and enjoy a beautiful afternoon.

  • negruvoda posted at 6:31 am on Fri, Dec 12, 2014.

    negruvoda Posts: 69

    Maybe if your son is in the care of a competent doctor, he could be treated in a few years. Therefore, if you don't like your local medical services or there aren't physicians who are specialized in this medical problem, you should search for a good Family doctor in Roanoke VA. At this clinic your son will be treated with care and compassion.

  • daniell17 posted at 6:04 am on Mon, Dec 8, 2014.

    daniell17 Posts: 36

    You have a difficult situation, but you should be thankful to God because you are still together and fight for your family. As you can see, these days, many families are getting divorced because they can not cope with a difficult situation. Even so, they should think at them and at their children and resort to a professional divorce lawyer, for instance from They will discuss with this legal representative what they should do next, to get separated without too many complications.

  • marvinvinn posted at 4:15 am on Tue, Oct 21, 2014.

    marvinvinn Posts: 61

    There are many unusual health problems nowadays, and for a few, there are cures, but for most of them the cure wasn't discovered yet. Also, nowadays, increasingly more people have started to search for natural cures to treat once and for all their diseases. For instance, tai chi for arthritis is a great natural remedy for anyone who suffer from this awful illness.

  • marvinvinn posted at 4:12 am on Wed, Oct 8, 2014.

    marvinvinn Posts: 61

    This is a serious illness and the family must be prepared for the worst. They should be in contact all the time with an emergency clinic because if a problem will occur, their son must be treated rapidly. Maybe in time, things will become better.

  • Michael Thong posted at 7:21 pm on Tue, Aug 6, 2013.

    Michael Thong Posts: 1

    hello, i am michael thong, your son sleeps a whole lot, i on the other hand sleep only a few hours a night, like say 2 to 4 hours a night, it's possible we could do a blood transfusion or what have you, it could balance him out, my blood type is O (universal blood donor), not sure of positive or negative or rh, i have 100% oxygen in my blood, my blood lab work was done at vcu/mcv hospital in july 2013, i play a whole lot like your son, i am 28 yrs old, i am willing to help...


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