Help me Accomplish this goal of mine...

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Since the beginning of Karli's life, we have been succeessful through so many scares.  Day by day life doesn't come easy to those with Sturge Weber.  But, one thing is for sure...  Life is good with all of you in it!

This is my Anniversary to when I was diagnosed with Sturge Weber...  13 1/2 yrs ago.  As I get older... I become more aware of what my condition is.  I want to help myself and others with Sturge Weber to make the best of our lives!  Why not!  With your support...  You will help me reach my goal, to make myself and others feel strong again!  

When I was 14 mo. of age I was diagnosed w/ SW.  At the age of 17 mo. I had a stroke... the doctors told my Mom I probably would not sit up or walk for that matter.  My Mom would not accept that and as a result taped me to everything in the house, and outside.  She said I would get so angry being taped that I would fight to get free!  Free from my cup, free from my toys, from my bike, from my hands... EVERYTHING in her sight!  But you see it was this that made me realize that I had a right side to my body.  And of course my spirit!!!  From that time till now I had close calls with seizures.  The truth of the matter...  7 years ago I was med-i-vacd to GMC, prior too... the hospital staff told my Mom they could do no more... and called for the family and church.  You see... I had been in a grand mal seizure for 2 1/2 hours.  My Mom watched it reap havic through my body and reported the direction everytime it moved.  The nurses felt it was under control and didnt want to move her...  at the same time of tracking, she would sing in my ear to keep me calm.  Another event had me at LVH where they tested me for everything... still to find out it was just my SW.  I lost 10 lbs. through that event and basically laid lethargic for 9 days.  You see with my seizure I lost the "know how" of swallowing and could not eat or take my pills.  It was difficult for my Mom - she and the doctors now call these events "storms".  They blow in... hover over my wellbeing for a while, then just disappear leaving me is shambles.  I have to rebuild skills that I am not sure of how they were lost.  How do I feel about my situation... and my seizures ~ I hate it.  Every night my Mom kisses me good night she reminds me to lay on my back.  One night my Mom was woke by her baby monitor...  she said my breathing pattern changed and woke her out of her sleep.  When she found me, I was face down in my pillow in a grand mal seizure.  Thank goodness she has this monitor... the outcome would have been very different.  I dont like my seizures... The seizures make me feel funny, I dont always have control of myself, my functions, I need to be carried around sometimesafter a seizure due to hemi-paresis... my world can change so quickly.  When this happened my Mom got the brush back out taking it to my arms, legs, feet giving me stimulation again.  :)  But, when I am Karli... I am riding horses, snow tubing, just started rock climbing, and I just got an electric scooter for my 15th Birthday...

Sturge-Weber was something I, MOM, had never heard of in my life.  In fact at Karli's birth nothing was mentiond.  Till one night we appeared in the emergency room with our daughter who had vomited and was draped across our arms like a piece of cloth.  Karli's Father and I were approached by the doctor in ER, questioning what we did in absence of the other!  "The Trauma to her brain is that of a car accident!  I will allow time for you to talk to one another."  It was such an absurd question... we couldn't even come to terms with it, or the realization of something happening to our baby.  We looked at one another as if...  he or she could have done something behind doors.  A few days later in ICU Karli was diagnosed with Sturge Weber Syndrome.  The ER doctor never came to us and appologized for his disrespectful way he approached us placing blame in one another.  No one can clear the memory.    It's a shame...  a "doctor's" ignorance to illnesses places doubt, blame and accusations on parents.  That same day watching Karli sleep, her Pediatrician came to her bedside asking how she was...  I looked at him, asked if he knew she had this syndrome?  He somewhat laughed and said, "well, yes... I guess it was a poor judgement call on my part for not informing you."  Her records were asked for immediately from him...  and at which time he wanted to know if we could "talk this over".  I was polite when I told him, I only worship one God, and it wasn't him!     Having no trust in life is one of the hardest things I have to overcome with doctors and this crazy little thing called Sturge Weber.  Our success is making so many aware of this syndrome...  doing what we can so no other family live our nightmare.  What we dealt with was damaging to our being, and then having to deal with the many challenges ahead with keeping our daughter safe.  Reaching out to all of you, may help one of your family member's one day. 

On a daily basis Karli struggles with her reading, writing and arithmetic.  Sitting down with her to review her homework seems to bring her a lot of good.  We read, and reread till she makes good understanding of the content.  Social skills have been hindered by the hurdles of her peers.  Self-esteem has taken extreme dives, as she would try so hard to make friends.  She doesn't like people to know her condition, or to even hear of me talking about her.  She wants to be seen as all do, "normal".  Her physical wellbeing is good, but she does have weaknesses which are noticeable to the trained eye.  Her right side is weaker than the left because of the seizures.   Carrying her bookbag becomes a difficult task for her because of her size and strength.  Giving her a list of tasks is incomprehensible...  so she has a homework list to turn to at the end of her day.  There are times when talking w/ Karli that you almost think you are discussing a dream, that what you are looking at her to comment on cannot happen.  She has no recollection of same and will tell you that.  Life right now is stable... we approach our hardest months through the winter into March.  This is her growth spurt, along with cold and flu season, as well as her time of diagnosis.  Behaviors become unexplainable, and when we hit this time, we know it's time for bloodwork.  Check levels, and watch her like a Hawk!!  Right Dad, wink! wink!

One last note before we close... My father was diagnosed w/ Brain Cancer.  We lost him 5 years ago in March.  He was the closest love I had who could explain what Karli goes through because he too experienced seizures.  He told me she is brave to go through them so often and show no signs of "why me" "this is hard on the body".  He cried to me... because he said he can't handle them like she can.  He said she was his HERO!

God Bless!

Please join us... in our goal to reach $5,000.00!  Help further our foundation in making strides for a stronger tomorrow!   

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Many thanks for your support -- and don't forget Please forward this to anyone who you think might want to donate too!

"Kindness in words creates confidence!  Kindness in giving creates love."