Body: Hey everyone i wanted to put my story out there about my little girl and help to spread awareness.

My little girl Jessica 3yrs old was born with a birthmark known as the port wine stain well she was also diagnosed with glaucoma and had to be transported to Morristown and be monitored in the icu for babies because none of the doctors in Newton knew what was going on. They all thought at first it was from her coming out fast and sometimes babies have marks but I knew as a mother something was different. well we went to Morristown and spent days and nights there running tests on her she had a mri and they found nothing and they had a ophthalmologist come in for her eyes said she would need surgery to correct the pressure so she had 2 or 3 surgeries under anesthesia to correct it and it worked that was over a course of 6 months of her life. Then when she was 1 yr old she started having seizures and we didn’t know what to do they weren’t normal seizures they were focal seizures. She would just stare to the opposite side of her birthmark for minutes and not come out of it. so we took her to a neurologist and they suggested we put her on meds called tegretol well needless to say we took her off of that real quick she ended up having a 40 to 60 min seizure on that stuff and we never put her on any other meds. so she was seizure free for a year and a half with no medicine we thought maybe we were ok and out of the woods well we thought wrong in early sept of 07 she had her episodes of seizures and this time we had to call 911 and she had to be rushed to hospital to get oxygen etc. they didn’t know what to do at the small hospital we have here in town so they got her conscious and then sent her home well that was a bad move then the next day she had another one and had to be flown to Morristown hospital where she underwent mri's blood work all this stuff u never want to see your child go through and I stayed there night after night as much as I could I was in the hospital with her on my birthday. And weeks following we were back and forth to see neurologist who put her on depakene and now she takes that 3x a day. I believe she will be on it for a long time to come and if not that one then another medicine. We go back to neurologist every few months to get her levels checked. When she is sick and running a temp she has some seizures. No matter if she’s on the medicine or not she still has them and we can’t do much about that except get her through it.

She’s my precious baby girl and I hate to see her go through what she does but she’s not the only one out there with this syndrome and no one really knows where it comes from and they have been doing some research but they don’t have enough money to do all the research to find any type of cure or any type of reason behind it. They say when my little girl was born she is a statistic and it wasn’t anything I did wrong but I can’t help but to feel like it was something I did or didn’t do during my pregnancy I have always thought that and I know there are a lot of mothers out there thinking the same thing. That’s why we need everyone’s help in raising awareness for this disease that is not known please everyone go to this website and print out do whatever you can to spread awareness. I would love to take comments and if anyone else out there has any kids who has this maybe we can get together and do something bigger I would love to go to our local newspaper.


Karen Janulin

Please help here is the web site....

http://www. sturge-weber. org/

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Jun. 22, 2008 at 3:03 PM You have a very strong and brave little girl.  that is alot for a child to go through. Here's hoping for all the blessings that you and your family may need and get.

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