Lucas at 5 months old.

Lucas, who is currently 10 years old, began developing as any other toddler.  He reached all of his milestones but seemed to be delayed in his speech and verbal skills.  Most often during his early years when Lucas attempted to communicate, one of three older sisters would typically finish his sentences for him.  Althought most of his communcation was difficult to understand one of his sisters seemed to pipe in and communicate his wishes for him.  He would point and grunt at a closed cabinet and one of them would usually  respond "He wants cereal."  At age 3 1/2 his lack of vocabulary really concerned us.  He typically would speak in 2 word phrases and did not have the necessary and expected communication skills for a 3 year old.  Our pediatrician at the time, stated he believed he was a late bloomer and attributed his lack of words to the fact that his older sisters typically spoke for him and things would be fine with more time.  Not satisfied, we pressed on for answers.  We  felt something just was not right and things didn't add up.  We were referred to an ENT doctor, who informed us that Lucas had fluid in his ears and could be the problem of him not speaking due to hearing issues.  This was the beginning of our first set of ear tubes. Ultimately, we had the fluid drained and removed along with the removal of his adenoids.  We were convinced that the problem was solved and that he would begin talking more.  Although, he picked up a few more words, we also noticed that he was very hyperactive.  He was into everything, all the time, all day.  When he was four, his behavior hit its peak, his vocabulary was not increasing and he was becoming frustrated sitting on the floor and putting simple board puzzles together with me.  He would often get angry and seemed throw things to get attention.  We soon learned after another series of doctors and tests when he was 4 that he had a hearing impairment.  We were convinced that the hearing aids would solve the problem.  He would hear us better and his vocabulary would increase! He would be able to communicate so his behavior would improve.  We spent the next 2 years trying to get him to wear the hearing aids.  We utilized all of the resources we could get.  We attended day treatment at Behavioral Pediatrics at a local hospital and his wear time increased. But as we tackled one thing, something else seemed to always arise to increase our growing concern that something was not right . Lucas continually suffered from upper respiratory infections beginning at 6 months of age. He was on the verge of being potty trained but regressed back and forth. At the age of 5 he no longer climbed up the playground equipment, and he no longer pedaled his big wheel. He stopped holding his silverware and would no longer feed himself. He started only sleeping a few hours a night. He had picked up a few signs and he stopped using sign language. One by one milestones were lost but not one doctor seemed to be able to tell us why. We went to specialist after specialist, test after test including genetic testing. My late nights of research convinced me were dealing with regressive autism. We put Lucas on a wheat and gluten free, organic diet. We dropped all of the foods he was intolerant to. Within months we saw a difference. For one, he used to scream and walk in circles, this ceased and has never returned, he no longer hit me, pulled my hair, and even though he still threw things, there was less of this. He even seemed to focus a little better. We started him on supplements, and for 2 years we did all we could to try to get our happy, smiling little boy back. In November of 2005 we were at our wits end. We were hitting week 6 of sleepless nights. He would pace back and forth all night, he would not even nap during the day. We were convinced he was in pain and we were set on finding someone to tell us what was wrong. Well, our tests revealed he had a large liver and from there we learned the term Mucopolysaccharidoses. Our geneticist explained to us that most likely Lucas had one of syndromes. We did the urine, skin, and blood samples and waited the 2 months to get the results back. I researched all I could and I knew it was Sanfilippo well before the confirmed diagnosis, which we received January of 2006. Everything now made sense. Every story I came across about another child with Sanfilippo could have been our story, milestones reached and lost, hyperactivity, impulsiveness, sleepless nights, hernia, ear tubes, joint problems and contractures, the physical features of a larger head, thick eyebrows ...the list goes on.

Lucas now seems to have bouts of joint pain, climbing the stairs without support seems to be more difficult.  He needs help with all of his daily skills from dressing, to teeth brushing, to using the bathroom, and help at every meal.  He is unable to do anything independently and needs supervison 24 hours a day.  We utilize a wheelchair for outings, this is to help keep him from becoming too fatigued. His left wrist has started to contract and he wears a wrist brace.  He is also experiencing contractures in his feet and right ankle and has just began wearing leg braces.  He has a few spontaneous words including Mickey Mouse which he shouted on our recent Make a Wish trip to Disney World. His mobility is still okay for the most part.  things are good, he is happy.  He still surprises us with new things every day.  He loves kicking and throwing the ball, running on good days, he loves books,  he enjoys watching  Spongebob, and loves playing with his big sisters Mariah 17, Chelsey 13, and Hailee 12.  We all love every moment we get to spend with him!  The dreams we had for him are still there.  We have altered them a bit to include that we hope as many people as possible are blessed with allowing him to touch there hearts as he does ours everytime he looks at us with his beautiful brown eyes!

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MAKE A WISH DISNEY PHOTO MAY 2006

Des Moines Register Article  July 2006 SEAN KEELER REGISTER COLUMNIST July 23, 2006 Cedar Rapids, Ia. —The sky is crying. It's raining on Pizza Night. Lucas Montgomery decides to throw a toy fashion show. The living room is his runway. He darts in and out on angel's wings, each time returning with something new. A big purple ball. A little green ball. An Elmo Walkman. A Spider-Man action figure. Stacey Montgomery recounts that afternoon's adventures when young Lucas stops in front of her, looking up. She smiles. "We played soccer, didn't we?" she asks her son. Only he doesn't reply. Doesn't move. He just stares at her, coldly, head tilted slightly to the side, as if waiting for a different cue. "Didn't we?" she asks again, slightly louder this time. Again, Lucas doesn't respond. He walks away. "You want tosay, 'God, give me his pain,' " Lew Montgomery sighs. "Let me take it instead of him taking it.'- - - In January, Lucas was diagnosed with Sanfilippo Syndrome, or MPS III-type B. It's a rare genetic disorder that occurs in roughly one in every 70,000 births. Symptoms include regressing communication skills, restlessness, seizures, possible hearing loss and a shortened lifespan. There's no known cure. It's degenerative. Cruel. Motor skills fade and vanish. Muscle control slips away. Lucas, who'll turn 9 a week from Monday, walks with braces on his legs and sometimes one on his left wrist. Steps are wobbly. Painful. As a baby, Lucas was fitted with a miniature Iowa football jersey with the number '34' on it, the one his father wore as a running back for the Hawkeyes. Now he's being fitted for a wheelchair. "That was hard," says Lew, 36, who works as a talent acquisition manager with Alliant Energy in Cedar Rapids. "You remember the things he used to do, like riding the bicycle and getting the ball. To me, it was sudden. One day, it was there and one day, it was gone. But Lucas has been an inspiration to me." And, he hopes, to others. Lew and Stacey have scheduled a charity run/walk, 'Laps For Lucas,' for Sept. 10 at the Prairie High School campus in Cedar Rapids. Early entries are $15 for adults, $10 for 18-and-under, with proceeds going to the National MPS Society.  Former Hawkeyes such as Marv Cook, Willie Guy and Scooter Lampkin have told the family they plan to attend. "We're fighters," says Lew, who scored 17 touchdowns for the Hawkeyes between  1989 and '92. "If it's too late to help Lucas, we feel we could potentially help some other kids. Very rarely do you have the opportunity to make a difference in somebody's  life. I'm not concerned about the first-place finisher." He's concerned about awareness. Sanfilippo symptoms usually don't crop up until a child is 2 or 3 years old. Often times, they're misdiagnosed. As a 4-year-old, Lucas was still struggling to form full sentences. He'd walk into the  kitchen with one of his sisters, point to a closed cabinet and let out a tiny grunt. "It was like a Rubik's cube," Lew recalls. "This part doesn't fit, or that part doesn't fit. Why isn't he talking? I know 3- and 4-year-olds who'll talk your ear off." Lucas would walk up to strangers, even in restaurants, and attempt to eat food off their plates. His hearing worsened. At the age of 5, he stopped climbing playground equipment or holding silverware. Stacey became convinced it was regressive autism. Meantime, Lucas started developing upper respiratory infections. He was a walking contradiction, possessing boundless energy while his immune system was failing him. During one six-week stretch last fall, he refused to fall asleep at night, or even take a single nap. "It was a rough stretch there," Lew says. "I believe you'd do anything for your kids.  Even if it means staying up all night, you do it." Tests found Lucas' liver was enlarged. Late last year, a geneticist in Iowa City took urine, skin and blood samples. Stacey researched on her own and came to the same conclusion the hospital did: MPS III. "It's like, 'If I had known earlier, maybe things would have been better,' " Lew says. "You feel like you've been cheated in a way." - - - No more. The Montgomerys bind the blessings of each day to their hearts. Lucas' three older sisters are healthy. He can still digest solid foods, although it must be cut up into tiny pieces first. He's learned some sign language. When the mood strikes him, he'll pull on his sisters' pigtails. Sometimes, when daddy is  sleeping, he'll sneak in and bop him on the head with his tiny Whack-A-Mole mallet. "He  doesn't mess with Momma," Lew says, grinning. Across the room, Stacey nods. "You keep hold of some kind of hope," she says. "It could be fast. Could be slow. Just keep him healthy and hopefully there will be a cure." Outside, the rain stops. Clouds tumble like puppies at play. Lucas looks long and hard at  the window and the sky above. A bright blue blanket stretches from heaven to horizon.