ALANNA AND DIANE WONG share a moment together at Alki. Alanna suffers from a rare brain disorder that causes severe memory lapses. Diane says her daughter is "a prisoner in her own mind and the four walls of our own home when she's ill."
She lives "Your worst nightmare times 10"
Consider falling asleep one night knowing you're only 17 years old, but when you wake up, you're two years older.
To the average person this may be unimaginable, but for Alanna Wong, a former upcoming tennis star at West Seattle High School, it's a nightmare turned reality.
Alanna has spent almost nine years with a disorder that has plagued her once normal life and left years of her young existence a mystery.
A turning point came at the age of 14 when two girls from school found Alanna sleeping on the floor of the school's bathroom. That incident, along with milder signs, pointed to a larger problem after Alanna hit puberty at the age of 10 said her mother, Diane Wong.
"When she woke up she was disoriented and confused," Diane recalled. "She didn't know where she was, she was frightened and she started to cry. She felt like she was in a dream."
Diane went searching for answers as to why her daughter had no memory of what had happened to her prior to the bathroom episode. No one could provide her with any answers.
Months later Alanna seemed to be back to normal, but at the age of 15 she woke up again feeling sick, frightened and unable to differentiate reality from dream.
Alanna, disoriented and afraid, was finally taken to the hospital by her parents Diane and Randy Wong.
"I could see in her eyes there was something wrong; there was a kind of blankness to her," Diane remembered. "I could tell something was wrong but even at that point I probably was still denying there was anything wrong."
An answer to their prayers
It wasn't until an aunt, who analyzed Alanna's odd behaviorisms, said she thought her niece may have a condition called Kleine-Levin Syndrome.
According to the Klein-Levin Syndrome Foundation Web site; "Kleine-Levin Syndrome (KLS), a rare and complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior, occurs primarily in adolescents. During an episode a patient becomes drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom.
"When awake the patient's whole demeanor is changed often appearing 'spacey' or childlike. They experience confusion, disorientation, complete lack of energy and lack of emotions."
"At that moment when I learned about KLS I had so many mixed emotions," said Diane. "I was sad that Alanna was going to be sick probably for a long time but on the other hand I knew she was going to heal."
Symptoms of the disorder can persist for days, weeks or even months. Sufferer's lives are put on hold. People affected can go for years without experiencing any symptoms only to have them reappear with no warning.
On average it takes about 10 to 12 years for women and six to eight years for men to heal from KLS.
"When I am healthy and I go to bed at night, I'm afraid that I may not wake up," said Alanna. "It's also very frightening to not know when I will wake up. It could be days, weeks or months before I am healthy again. When I am sick, it's like I'm in a nightmare stage 24/7. Think of your worst nightmare and times that by 10 and that's what it's like for me when I'm ill."
Now 19 years old, Diane is praying that it will be 10 to 12 years for Alanna, but it does vary for patients on a case by case basis. However, since she is not on any medications they hope it's something that will heal on its own.
Alanna was formally diagnosed with KLS at age 17 by Dr. Katherine Brown, MD of the Polyclinic in Seattle who evaluated and tested Alanna for six months.
"During an episode when Alanna is seemingly awake she actually is living in a semi-conscious state," said Diane. "Her mind races with nightmarish thoughts and when she wakes up from an episode her mind is blank. So the last thing she remembers is the day or a couple days before she fell ill."
Shortly after awaking from an episode Alanna's memory returns somewhat in flashbacks of what had happened during an episode. This is the most devastating effect to deal with said Diane.
"She'll remember things but she won't remember if they've occurred," said Diane. "It's like thinking if it was a dream or not. But it's different with her because she actually is living on what she may believe happened in a dream."
Randy, Diane and Alanna's older sister Melinda, have had to turn their lives around 180 degrees to care for Alanna, whether she is "asleep," during an episode, or "awake."
KLS is a rare disease and the causes are still unknown. No medication has shown to help heal or prevent symptoms, and all test results of KLS patients like Alanna, including brain imagery, electroencephalogram which measures the electrical signals within your brain, serum virus titres, and cerebrospinal fluid examination which analyzes the fluid surrounding the brain and spinal cord come out normal.
There is no test to specifically diagnose KLS. Doctor's can only match up symptoms of a patient to symptoms of known sufferers. It wasn't until Alanna was asked to be involved in ITV's (a British TV channel) documentary on rare neurological illnesses that there was evidence of her possessing the illness.
Wanting more evidence of Alanna's sickness, the producer of ITV connected the Wong family with neuroradiologist, Dr. Bart Keogh, MD, PhD of Swedish Hospital in Seattle who took a Functional MR Imaging to show the vast differences of Alanna's brain both when she is healthy and sick.
Instead of just looking around the brain the procedure looked deeper inside and examined the anatomy of the brain, determined precisely which part of the brain is handling critical functions, such as thought, speech, movements and sensation (called brain mapping) and helped assess the effects of stroke, trauma, or degenerative disease (such as Alzheimer's) on brain function.
Keogh found Alanna's brain functioned perfectly while she was "awake" or healthy.
She was able to process speech and language through her left-brain, hearing through her right and left temporal lobes and had no problems with blood flow to her brain. Keogh said it was one of the healthiest brains he had seen in a long time.
"For me it was the best news because I knew there was nothing structurally wrong with her brain," said Diane.
Nine days later, after falling into an episode Alanna was taken back to Keogh's office and they performed the same procedure but this time it was like they were looking at a different person's brain.
To Keogh's surprise Alanna was not able to process any information. He found this highly unusual because the second time individuals take the test he often sees better results.
Keogh found that when she was sick her left brain completely shut down during the speech and language part of the test, hearing in both her lobes were diminished, and it took her a while to make sense of what she was hearing. The blood flow to her brain was also restricted.
"It's the first time there was scientific evidence and proof that Alanna's brain couldn't function," said Diane. "The problem was that Keogh never would be able to tell us how to fix the chemical changes and why the blood wasn't flowing to a crucial and critical part of her brain, but it made sense why she was not functioning properly."
The cruelty of the illness is that people expect certain behaviors from others, but KLS sufferers have no control, explained Diane.
"The doctor said himself this is not a choice and Alanna has no choice in this," said Diane. "She cannot fake this and you can't decide which side of the brain should or shouldn't work."
Help to heal
Because episodes come about unexpectedly, many relationships and opportunities were destroyed for Alanna and much of her life has been put on hold indefinitely.
"This illness is very lonely and devastating," said Alanna. "I have lost just about everything. I've lost friends, relationships, job opportunities, sporting events and have lost my social life. There are a few people that I know I can always count on and will be there for me all the way through this rough time and that's my family."
With her father always there in time of need, her sister an advocate to help people understand KLS and her mother as her savior and best friend, Alanna realizes how much her family, especially her mother, has given up for her. Losing friends, connections and life experiences all for the sake of caring, loving and healing her back to health, Alanna said she couldn't be more grateful.
"Having KLS has opened my eyes," said Alanna. "I am so appreciative that I have life. The little things in life make me happy now. Being free and healthy make me happy now. I do not take life for granted."
"I know that winning isn't everything, material things aren't very important, what you look like on the outside isn't important, being popular isn't important and being the best and first isn't important. What I feel is important is love, family, treating someone with respect and putting your health first," she said.
Diane wishes she had been able to explain her daughter's illness sooner, before people had already formed their own opinions.
"But it's not too late to explain what is actually going on since there is now an answer," said Diane. "The reason this illness is cruel is because Alanna's freedom is stolen from her. She's a prisoner in her own mind and the four walls of our own home when she's ill."
The Wong family hopes support from friends, family and an understanding community will help speed up Alanna's healing process.
"If people were to ask what they can do to help Alanna, the best thing would be if they were to see her to just give her a wave and smile," said Diane. "This would be the kindest gesture. Alanna is lonely and she's been misunderstood and just a smile and wave when people in the community see her out would be so helpful for her."
Unable to schedule a few months, weeks or even a day ahead, Alanna and her family take their lives one day at a time.
"Having good thoughts and dreams about my future keeps me alive," said Alanna. "I want to graduate from a college one day. I want to play tennis at a college one day. I want to have a kind and compassionate partner one day. I want to have a free mind and I want to be healthy forever one day. I can't wait for the day till I never have to see another episode again."
For more information on KLS visit www.klsfoundation.org or to see Alanna's segment on ITV's series on neurological illnesses contact Diane Wong at email@example.com.
Allison Espiritu may be reached at 783-1244 or firstname.lastname@example.org.