Connect with us

Illinois

Illinois family’s fight to find treatment for rare disease benefitting 2 sisters years later

Published

on

Illinois family’s fight to find treatment for rare disease benefitting 2 sisters years later


It has been 5 years since a remedy for Batten illness originated within the Chicago suburbs. The uncommon illness impacts younger kids, paralyzing toddlers as they develop.

Advertisement

The remedy isn’t a treatment, however it’s already offering great hope for an additional native household.

What are the percentages that two Chicago-area households would have kids recognized with the identical uncommon illness?

For the VanHoutan’s, the miracle remedy got here too late. However with out their struggle, the Beedle household would not be the place they’re in the present day.

Advertisement

In Kankakee County, Annabell and Abigail Beedle reside proof of one other household’s persistence. The sisters each have the gene that triggers CLN2 Batten illness. Each are being handled with a mind enzyme that slows and blocks the results of the illness.

“This remedy is an absolute miracle and the VanHoutan household, their persistence their dedication, their ardour to see this undertaking by way of is outstanding. They’re true pioneers,” mentioned Amanda Beedle.

Advertisement

SUBSCRIBE TO FOX 32 CHICAGO ON YOUTUBE

Earlier than the Beedle ladies have been born, in Downers Grove, the VanHoutan household was waging a conflict in opposition to the identical illness that many knew nothing about.

“Once you begin to learn what’s going to occur to your little one, you are in only a actual state of disbelief,” mentioned Tracy VanHoutan.

Advertisement

Their seemingly wholesome 4-year-old son Noah started affected by seizures, speech impairment and steadiness points — signs of CLN2 that ultimately steal a baby’s means to stroll, speak and see.

On the time, there was no remedy.

Advertisement

“You simply cannot imagine that one thing like this may occur to little youngsters,” Tracy mentioned.

FOX 32 SPECIAL REPORTS

Noah’s little sister, Laine, additionally had the CLN2 gene. Her twin sister Emily didn’t.

Advertisement

After Noah’s prognosis, the VanHoutan’s based Noah’s Hope — a nonprofit that raised $30,000 in lower than two months to fund Rutgers College analysis for a treatment.

The findings have been then put to make use of by California-based BioMarin Pharmaceutical firm.

Advertisement

“I feel there’s most likely nothing we have performed within the firm, and I’ve been with the corporate for 10 years, that is captured our consciousness, our pleasure, you already know motivated us to do greater than this program and this drug,” mentioned David Jacoby, Vice President of BioMarin Pharmaceutical. “It is given us a way of goal but in addition a way of ambition about different issues that we will resolve as properly.”

On April 27, 2017, the primary remedy known as Brineura hit the market — thanks partially to the analysis funded by the VanHoutan’s.

But it surely was too late for Noah and his sister Laine.

Advertisement

“In fact I’d like to have my kids right here in the present day, but when they cannot be right here they may as properly be working their magic from above,” mentioned Jen VanHoutan.

Two Chicago households, and two totally different outcomes. The identical prognosis, and the identical hope for the longer term.

Advertisement

“For us, the longer term is measured in moments, the grins, the laughs, the time spent collectively, and this remedy has afforded us so many extra of these moments and for that, our hearts are eternally grateful,” mentioned Amanda Beedle.

The VanHoutan’s are at present engaged on a pilot program in New York state to develop a new child screening for the illness.

Advertisement

Funds are being raised by way of Noah’s Hope and its sister group Hope 4 Bridget — began by one other household confronted with Batten illness in Carpentersville, Illinois.



Source link

Continue Reading
Advertisement
Click to comment

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Illinois

Illinois’ important trio that stepped up big time in KJ’s absence

Published

on

Illinois’ important trio that stepped up big time in KJ’s absence


A surprise late scratch of a potential top five NBA draft pick like the one of Kasparas Jakucionis prior to Wednesday’s game very well could’ve thrown a wrench in the Illini’s recent momentum.

Or, at the very least, it probably should’ve looked like it had some effect. A 39-point drubbing? A 34-4 first half run? Alright, I guess nothing can slow down this Illini train right now.

Illinois didn’t skip a beat in its second emphatic victory in three games — and a big reason for that was the trio of guys it had step up to pick up the slack for its missing leader.

As read on TCR last night, the Illini made more history on Wednesday. Ben Humrichous, Tre White and Morez Johnson all reached 20 or more points, marking just the third time since the 1938-1939 season that Illinois had three 20-point scorers in the same game.

Advertisement

The individual performances of those three were particularly notable because all three of Humrichous, White and Johnson put up their respective big nights in entirely different ways. And all three used Jakucionis’s absence to send a message about how far they’ve already come just a quarter of the way into conference play.

For Morez Johnson, Wednesday’s 20-point, 11-rebound double-double encapsulated everything he brings to the floor the second he steps on it. It was efficient — done in just 20 minutes — and was the result of his constant energy and activity that found himself around the basket on what felt like every possession.

Johnson’s been perhaps the most consistently impactful producer in the Illini rotation all season. His per-40-minute numbers are absurd — try 14.6 points, 17.7 rebounds and 3.3 blocks. His total rebound rate would rank in the top five nationally if he had the minutes to qualify. He just hasn’t gotten the opportunity to stuff the stat sheet as loudly as he did Wednesday. A well-deserved and long overdue breakout night.

Advertisement

Photo by Michael Hickey/Getty Images

Advertisement

Ben Humrichous’s explosive first half was the flashiest performance of the night, showcasing the ability to catch fire from deep that has always been there for him despite his December struggles. Humrichous nailed five first half threes and was a big reason the Illini’s lead ballooned in the midst of their dominating scoring run.

The most encouraging sign for Humrichous, though, is the way he’s beginning to diversify his game. Through December, Humrichous had attempted just 12 two-point attempts on the season, pretty much exclusively acting as a spot-up shooter on the perimeter. In just three games in January, Humrichous already has 14 attempts from two.

He flashed the ability to take advantage of mismatches with his size in some Marcus Domask-like mid post isos. He’s also gotten noticeably more aggressive attacking closeouts and finishing with force at the rim when the opportunity presents itself. Pair those things with a season-high 9 rebounds on Wednesday and you’ve finally got the version of Humrichous that makes Illinois its most dangerous self.

And quietly in the midst of everything else came another extremely productive Tre White performance. White reached 20 points and 7 rebounds in a similar manner to most of his recent production — doing a little bit of everything and doing it in a very efficient, inconspicuous manner.

Over the last 7 games, White is now averaging 16.1 points and 6.2 rebounds per game on remarkable 63.3% efficiency from the floor. He’s turned himself into a consistent second scoring option alongside Jakucionis when he’s out there while making the types of winning plays that result from competing to win, as Brad Underwood detailed Tuesday.

Advertisement

White has made significant strides in almost every area, from scoring off the dribble to rebounding to the defensive end, and it’s taken Illinois to an entirely different level. Wednesday’s performance showed once again how dangerous he can be when he’s attacking and playing with high energy.

As a whole, the Illini certainly hope they’re without their star player for long. But their response without him — particularly from the Johnson, Humrichous and White trio that will continue to be vital to their success — was a welcome sight.

Illinois proved they have the depth to survive a man down while also showing what things can look like when its complementary pieces are at their best. Right now, it’s hard to imagine anything slowing down the roll these Illini are on.



Source link

Advertisement
Continue Reading

Illinois

How To Watch Illinois vs. USC: Game Time, Odds, TV Channel & Online Streaming

Published

on

How To Watch Illinois vs. USC: Game Time, Odds, TV Channel & Online Streaming


How to Watch No. 13 Illinois vs. USC

Game Time: 11 a.m. Saturday

TV Channel: Big Ten Network

Online Streaming: FoxSportsGO

Radio: All Illinois basketball games air live on radio in the Champaign (WDWS-AM 1400) and Chicago (WLS-AM 890) markets. The game will also be broadcasted on other networks throughout the state; check the Fighting Illini Radio Network for more information.

Advertisement

Odds: N/A

Quick Hits

Illinois Fighting Illini (12-3, 4-1 Big Ten)

Head Coach: Brad Underwood (8th Season)

Last Game: 91-52 win over Penn State

Gameday Reading:

USC Trojans (9-6, 1-3 Big Ten)

Head Coach: Eric Musselman (1st season)

Advertisement

Last Game: 82-69 loss to Indiana

What Happened The Last Time These Two Played?

Nov. 19, 2012: Illinois 94, USC 64

LAHAINA, Hawaii — Brandon Paul scored 26 points and Illinois used a hot first half to ride to an easy 94-64 win over USC Monday night at the Maui Invitational.

Illinois shot just under 69 percent in the first half on its way to a 31-point lead at the break. USC pulled no closer than 18 points in the second half despite some sloppy play from Illinois, which finished with 20 turnovers.

The Illini (4-0), who never trailed, also got 13 points from DJ Richardson, 11 from Tracy Abrams and 10 from Tyler Griffey.

USC (2-1) was led by Eric Wise with 13 points.

Advertisement

Illinois plays host team Chaminade on Tuesday. The Division II school knocked off Texas earlier Monday.


By the way, this is weird. Our “GameThread” on TCR (it’s something we used to do for games, you may remember), included this:

Advertisement

“By the time this game is over both USC and the entire state of Hawaii may be in the Big Ten.”

Uhhhhh, good call, Tom Fornelli!



Source link

Advertisement
Continue Reading

Illinois

Thornton grad Morez Johnson has career-high 20 points as No. 13 Illinois routs Penn State

Published

on

Thornton grad Morez Johnson has career-high 20 points as No. 13 Illinois routs Penn State


Ben Humrichous scored a season-high 21 points, Thornton grad Morez Johnson Jr. had a career-high 20 points with 11 rebounds and No. 13 Illinois beat Penn State 91-52 on Wednesday night at State Farm Center in Champaign for its fifth consecutive victory.

Tre White also had 20 points to help Illinois (12-3, 4-1 Big Ten) win with scoring leader Kasparas Jakucionis sidelined by a bruised forearm.

Penn State star Ace Baldwin Jr. aggravated a back injury early in the first half and didn’t play in the second half. He didn’t score, missing all six of his shots.

Nick Kern Jr. had 13 points for the Nittany Lions (12-4, 2-3). Zach Hicks added 11.

Advertisement

Takeaways

Illinois: After sweeping No. 9 Oregon and Washington on a West Coast trip, Illinois was tasked with beating nemesis Penn State without Jakucionis, whose absence was announced just before the game. Humrichous and Johnson made up for the loss of Jakucionis.

Penn State: The Nittany Lions came into the night as the 10th-highest scoring team in the nation, averaging 86.8 points. They had scored a program record 80-plus points in six straight games. Penn State shot 31% against Illinois.

Key moment

A 21-2 Illini run in the first half gave them a 26-13 lead. Penn State missed nine straight shots during the stretch, going 7:56 without a field goal.

Advertisement

Up next

Illinois: Hosts Southern California on Saturday.

Penn State: Hosts No. 9 Oregon on Sunday.





Source link

Advertisement
Continue Reading

Trending