Posted Wednesday, May 13, 2009 --- 11:10 a.m.
By NBC15's Sarah Carlson
We do a lot of stories about children in our area suffering from medical problems that are a mystery, even to doctors.
Now, we introduce you to a little boy who is fighting for his life while his family fights for answers.
Ellen and Jon Jordan are like many growing families in our area.
They juggle children, work, and trying to sell a house in a tough economy.
But their soon-to-be two-year-old son Jachin is fighting a battle for his life and you can help.
"Soon as he came out, you know the doctors took him away and pretty soon within a couple minutes there were doctors coming in and out."
Jachin Jordan was born June 26, 2007. He's the third of Ellen and Jon's four kids.
The pregnancy was normal. But his birth changed everything.
"I had no clue. It looked like he was very purple. It looked like he was almost bruised?"
That turned out to be a port wine stain birthmark, covering 70% of Jachin's body.
It wasn't long after that ... he was diagnosed with Sturge-Weber Syndrome.
"It's a vascular disorder which causes abnormal blood vessels.. which is why he has the birthmark, which is why the birthmark goes into his brain," says Ellen.
And that causes seizures.
In Jachin's case: the kind that stop his breathing.
"He could be acting completely normally and then all of a sudden he'll just kind of go blank. He'll just stare off and you can just see that his breathing slows down," Ellen says.
They've been to UW Hospital nine times in the last year.
Luckily, he hasn't had a seizure since last Thanksgiving.
But Sturge-Weber also impacts his body movements.
"He can't use the left side of his body very well at all. He can move it, but he can't use it, which has caused his developmental delays and he can't walk. And we believe it's probably affecting his speech as well."
The only surgery to cure this disease isn't an option since Jachin has the birthmark on BOTH sides of his brain.
"Our greatest fear is to wake up in the morning and have Jaquin not be there. We've heard stories of that where children sleep through a 6 hour seizure and wake up and they're gone. We believe 100% that that is not going to happen to Jaquin, but we're prepared at the same time."
In the meantime, they have hope for him.
They are hosting an annual golf outing.. which last year raised ten-thousand dollars for research on Sturge-Weber Syndrome.
"The sky's the limit for him. He eventually could-- we plan on him learning to walk and learning to talk and all that so he could with therapy learn to use the left side although it will always have a weakness but like I said he is capable of more than we know right now. "
The Jachin Jordan golf outing is coming up soon, and the family is looking for golfers and businesses to sponsor holes for the cause.
It's Friday, May 22nd at the Meadows of Sixmile Creek in Waunakee.
Shotgun start is at 10am with a cocktail reception at three o'clock.
If you are interested in golfing or donating, please call Jon Jordan at 850-3913.
