Saturday, February 5, 2011


I started this journey singing God's praises, it seems only fit I enter the next phase singing God's praises. Let's start by praising Him for taking the pain from Brie's leg, allowing her to walk again. Next let's praise Him for stopping the sensory seizures in her thumb, hand and face. Finally let's praise Him for keeping me sane during this whole ordeal.

I would be lying if I didn't say I wasn't scared, in fact it was that adrenaline that kept me persistently seeking answers. And we believe to have an answer or two. It is believed we are dealing with two separate issues, occurring at the same time. First that she was having a sensory seizure in the thumb, hand and face as a result of her Sturge-Weber which is consistent with her EEG and the placement of her brain involvement. After digging into some research the Sturge-Weber Foundation published Robert and I believe the onset of these seizures were caused by the four vaccines she received seven days prior to the start of her seizures. However, we have no proof of this--just a gut feeling!

Secondly, her leg pain was actually cause by an infection completely separate from the SW, which is consistent with blood work and the fact the pain jumped around. The antibiotic seems to be helping, she was definitely making up for lost play time today! Praise God for antibiotics!

With answers in front of us it's onto the next step in the journey--Educating ourselves so that we can be our child's best advocate. First up a return visit to the neurologist, followed by a trip to Orlando, FL for the Sturge-Weber International Conference and then an appointment at the Sturge-Weber Center of Excellence in Houston. I fear the journey has just begun, but I do not fear the journey itself. God is in control, God has a plan for Brie and I pray through her God would be glorified.

Thank you friends for you prayers, phone calls and comments I am over-whelmed by your love and kindness


  1. I am so glad you are on the road to answers!

  2. Jess, Thanks for the update! I pray that God gives you and Rob peace and wisdom!

  3. what a post! we'll keep praying and what an AWESOME bonus that the conference is in Orlando!

  4. You need to look at Sturge Weber from a WHOLE differsnt perspective. Please investigage getting tested for the MTHFR Gene T677c and A12098. You and your husband as well as your daughter should get tested for this and any other children you have in your family. I have a niece who has Sturge Weber and we have all been tested and have the MTHFR Gene. You can be heterozygous with the A12098 and T677C or homozygous for MTHFR C677T, The reduced MTHFR function causes the inability of the body to convert homocysteine to the methionine synthase pathway for the end result of our bodies manufacturing glutathione. Since we have 2 snips our bodies can not process the metals, and you add mercury and aluminum via vaccinations ( both neuro toxins your resut is heavy metal poisoning that has the same symptoms as autism or many other health issues. Of course this goes hand in hand with the addition of the Hep B shot and HIB shot added to the pediatric vaccine schedule in 1991 increasing the amount of thimerosal exposure in the first 18 months of life by 300%. All of my children have all been diagnosed with Mercury poisoning via an urinary porphyrin profile My oldest son who is disabled tested the highest levels of mercury by 3 fold. If we would test for MTHFR at birth, like we test for PKU, than we could identify those who can not process metals.

    This is a huge part of why kids get sturge weber. It is a metylation cliche' during the pregnancy of a women. Please look at some of the research. Please google "Sturge Weber and the American Acadamy of Pediatrics" You will find a study showing 7 newborns who all have the MTHFR Gene. If you find out that your daughter has this it is a simple way of her not having seizures, migraines and stroke ever again in her life!

  5. Please google Dr. Neil Rawlins and you see that this causes so many problems and doctors just do not want to see that this is the root problem of so many disabilities, diseases and mental problems. If you methylate the toxins then you will be able to stop the horrible part of Sturge Weber which is the heart attacks, strokes and seizures!

  6. I could better explain this to you by calling at 314-651-2700 or emailing me at I have so much information that could possibly help your daughter as well as the rest of your family.