News from RedOrbit Nov. 23, 2006

Lew, Family Fight Their Own War at Home
By Kelly Beaton, Waterloo-Cedar Falls Courier, Iowa
Nov. 23--CEDAR RAPIDS -- Five years ago, former Waterloo East and University of Iowa star rusher Lew Montgomery began his on-going battle.
"My initial thought, when they first gave us the diagnosis," explained the 36-year-old Montgomery, "was, 'Okay, give me the playbook, tell me what I need to do. Give me the blueprint. Do I need to take him to the Mayo Clinic? Johns Hopkins? Tell me.'"
Soon, Lew's wife, Stacey Montgomery, broke in:
"There is no playbook," she said.
Lew nodded.
"You start thinking about when you were tossing him the ball, or we were laughing," Lew added. "Then, the next thing you know, he's getting fitted for a wheelchair.
"And you're like, 'Wow: This is reality? How do you deal with it?'"
The Montgomery family portrait reminds you of those you find in frames on sale at Sears.
Lew and Stacey have three girls -- ranging in ages from 10 to 15 -- who greet you at the door with welcoming smiles. Quickly, they scurry back to the basement to resume play.
On this autumn afternoon, nine-year-old Lucas Montgomery is feeling especially lively and mobile, wearing his gray Hawkeye hoody.
He lingers upstairs, near mom.
Like his sisters', Lucas' eyes light up as a stranger stands before him. No smile, though. His face is a blank slate.
When he loses interest in the visitor, Lucas paces the hallway from his home's upstairs bedrooms back to the kitchen. Occasionally, he marches in place, shuffling slightly and side to side. Occasionally, he breaks from his routine to stare at his reflection in a TV screen.
The continuous pacing helps ease little Lucas' joint pain, explains Lew.
Eventually, you understand -- Lucas' young body is at war with itself.
His left wrist is wrapped in a splint, to ward off "contraction," or a clenched-fist position. Likewise, his legs are in splints, since his ankles are starting to contract and twist inward.
These, in part, are the symptoms of Sanfilippo Syndrome, one of the most common forms of a devastating and largely mysterious disease known as Mucopolysaccharidoses, or MPS. Lucas was diagnosed with the disease last January.
At age four, Lucas Montgomery was a model of perpetual motion. He played catch. He climbed up on kitchen stools, joining his sisters for breakfast.
But then, steadily, and in mystifying fashion, it all began to slip away. Upper respiratory infections became Lucas' nearly constant companion. Hearing became a struggle, as did learning. An adenoidectomy was needed, as were a pair of hernia surgeries.
Suddenly, the Montgomerys' only son could barely handle silverware. Or speak. Or sleep (he often sleeps just 2 hours a night, whiling away the rest of the night pacing).
For nearly five years, the Montgomerys searched for answers.
"It's been a mystery to us," said Lew, a 1988 East High grad, of Lucas' poor health.
Finally, last January, the family got its answer. It wasn't necessarily the one they wanted.
The staff at University of Iowa Hospitals and Clinics finally solved Lucas' mystery, determining that the boy had MPS -- a rare genetic disorder in which patients rarely reach adulthood. The life-expectancy for patients afflicted with Sanfilippo Syndrome, according to the National MPS Society, is between 14 and 20 years of age.
Remarkably, the Montgomerys have managed to stay as positive as possible despite their situation.
And Lucas' life isn't all doom and gloom. Although he's occasionally relegated to a wheelchair as a result of his joint pain, Lucas rarely displays frustration.
"Here's a kid," explained Lew, "who can't verbalize his thoughts or say 'Hello' back to another kid, but yet he still has that kind of inspirational impact on people."
And, dad pointed out proudly, "he may not speak back to you, but he'll throw you a 38-sweep or a trap-play every now and then."
Despite their usually positive outward appearance, sometimes the Montgomerys let the pain in, if only for a moment. Occasionally, Stacey's eyes get red around the rims when speaking of her son's plight. It's inevitable; MPS' fickle nature tends to toy with emotions.
For example, some days Lucas giddily bounds to his school bus, while others his movement must be aided by his wheelchair.
"Every day it's something different," Stacy said, voice cracking slightly. "But then again, we're thankful that he is as mobile as he is for now, that he's as alert as he is for now."
Lucas' father concurred. Not so long ago, Lew Montgomery was a 6-foot, 215-pound bulldozer of a running back who could out-muscle opponents for five touchdowns in a single game. However, he's never had pressure quite like this applied to his shoulders.
Lew Montgomery has always been able to shake off physical pain. He's not quite as equipped to handle emotional duress.
"When (MPS) symptoms begin to block the natural functions of kids, being able to walk and talk," Lew explained, "as a parent, you have to watch these things happen, and ultimately you don't have any control. That's devastating.
"When we got the news -- when we got the diagnosis -- we were like, 'Are you kidding me? How? Why?' I mean, you've got an average lifespan of 15? And you think, 'Well, gosh, he's nine now ... .'"
Later, Lew confided, "I want, so bad, just to be able to take some of the pain he's feeling."
Although their emotions occasionally overtake them, the Montgomerys, by and large, have displayed unwavering determination and will in their battle against MPS. They've scoured the far reaches of the Internet seeking information. They've networked with other families stricken with the disease. They've held fund-raisers, passing along the proceeds to MPS researchers.
It's the best they can do. It's all they can do.
"The silver lining," said Stacey, "is we have a diagnosis. I mean, even though we don't particularly like what the outcome could be, at least now we're not in the dark as to what's going on."
A cure for MPS -- and for Sanfilippo Syndrome, in particular -- doesn't currently exist, although it isn't completely out of the realm of possibility. The FDA recently approved an enzyme-replacement therapy for Hunters Syndrome, one form of MPS.
But, ultimately, until a cure is found, the only thing that gives the Montgomerys a foot-hold on sanity is their faith. And, in the Montgomery household, that's in ample supply.
Late on the aforementioned autumn day, for instance, Lew sat stoically with Lucas at his side, watching an informational MPS video.
Midway through the film, parents on screen began recalling when they had first received fatal diagnoses for their children. At that moment, Lew leaned over, kissed his son on the forehead, slapped him on the backside and whispered.
The father's message was short and sweet. He said simply, "Go play."
Contact Kelly Beaton at (319) 291-1456 or kelly.beaton@wcfcourier.com
WHAT IS SANFILIPPO SYNDROME?
Sanfilippo Syndrome, one of the many forms of a Mucopolysaccharide (MPS) disorder, is a rare genetic disorder that results in an estimated 1 out of every 85,000 births.
In the Sanfilippo Syndrome, the enzyme that breaks down Mucopolysaccharides (essentially sugars) isn't produced properly, so the sugars remain stored in human cells, causing progressive damage, including hyperactivity, restlessness and learning disabilities.
Both males and females are effected equally. MPS patients rarely reach adulthood. -- Source: www.bbc.co.uk
-- For more information, visit www.mpssociety.org 
 

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