Trail Teen Continues Fight For Her Health
Trail Daily Times
Fri Jan 8 2010
Page: 1 / FRONT
A Trail teen who could barely stand for more than five minutes in late November is back on her feet and running each day.
Alannah Amantea, 17, continues to do remarkably well after a near death experience in the fall, when she learned she had a rare disease where the body's immune system goes into overdrive and begins to attack healthy tissues and organs.
"I remember not even being able to lift myself out of bed - wow, things have changed so much."
It's hard to believe she's the same girl that was rushed to B.C. Children's Hospital, where her parents were told their daughter wasn't going to make it. What initially was believed to be the flu quickly changed course when Alannah's lungs filled with fluid and began to fail in Trail.
Alannah has learned she has secondary hemophagocytic lymphohistiocytosis (HLH), a disease named for the two infection-fighting white blood cells that are overproduced in the bones.
In November, the family nervously waited the results of a blood test that was sent to Holland.
The J. L. Crowe student, who will graduate this year, is relieved that she has a lesser case of HLH, as the primary form is more dangerous and can only be resolved with a bone marrow transplant.
Her body has reacted well to the 30-odd medications - including steroids, which initially swelled her face and irritated her skin.
But the teen still has to be cautious and won't start to phase out the drugs until March - a three-month process.
"They don't know how my body is going to react - weaning is the crucial part, it will tell us whether I'm out of the clear or not."
If her body and immune system is triggered while coming off medication, doctors will take more aggressive measures. At this point, there have been no answers as to why Alannah got HLH and the family can only verify the teen's wellness by monitoring her body.
The disease is usually found in people under the age of 15, and can be caused either by genetics or related to abnormal immune system activity.
"I actually don't feel sick at all. I feel like I'm back to normal. Besides a cold, I feel awesome!"
In December, Alannah got out of a wheelchair and back on her feet and has since been running about 20 minutes a day to prep for a cross-training course she'll start at school next semester.
She has been taking home schooling but will be back at the Crowe in February.
"I'm hanging out with my friends a lot more, I don't have to be so sheltered," she said, though her parents Greg and Anita caution her that the fight isn't over.
Alannah will visit the children's hospital again in March where she will receive a brain scan and will make several trips down for checkups thereafter.
"My mom says I have lots of mood swings - my brain can't cope with stress," she said, a challenge after finding out her best friend Simone Lapointe, a 17-year-old Crowe student, was killed in a head-on collision east of Fruitvale in early December.
Lapointe was one of the students spearheading a fundraising initiative at the high school, where kids filled a large watercooler with change totalling just over $350 for Alannah's costly trips down to Vancouver.
Rosewood Village staff, where her mom Anita works, also collected about $1,000.
The response from the community has been unreal since the family opened a trust fund at a local credit union. One donation of note was the remaining balance in Mitch Matteucci's trust fund, donated by parents Debbie and Joe Matteucci who lost their boy a year ago to a blood disease.
"It's been overwhelming. I don't know how to thank everyone without insulting anyone," she said. "I don't want to leave anyone out."
Alannah thanked a crowd at a Smokies game Tuesday, which brought in just over $550 in donations, partly from ticket sales, a puck toss and a cut of a 50/50 draw.
"We were hoping to reach $1,000 but I guess a lot of people were watching the World Junior Hockey Game and staying off the winter roads," said Rick Basso, who is on the Smoke Easters' board of directors.
On a good night, the rink will have over 1,000 people filling the arena but the fundraising initiative only brought in just over 800 fans.
Alannah has kept her classmates updated on her progress through the school's student newspaper, writing she does for a journalism course.
The strong-minded teen aims to be fully recovered in time for grad.
Her next trip down to the Coast will be not only to check her health but to find a gown to wear to the prom.
Donations can be made for the family at Kootenay Savings in Trail under the Alannah Amantea Fund No. 1309574.
© 2010 Trail Daily Times