Thank you for visiting my Faces of Miracles event page to benefit The Sturge-Weber Foundation. 

Please help me by joining my team to help raise funds or by making a donation to my fundraising page.

Mary Kate is a lively 3 1/2 year old.  She lives in Omaha, NE with her
parents, an older sister and brother (7 & 4) and just became a big sister, a
role that she was very excited to take.  She is a star in the making and
loves to perform for everyone with a song and dance.  She loves Dora and
princesses and all thinks purple.  Mary Kate is extremely compassionate but
that doesn't stop her from instigating a wrestling match with her older
brother (and she is often victorious.)  She loves going to ballet class and
has a very full social calendar for a 3 yr old with all her playgroup
friends.

Mary Kate was born July 20, 2006.  It came as a huge shock when her
pediatrician told us that what we thought was a bruise on her eyelid and
face was in fact a Port Wine Birthmark and would require laser treatments
and could possibly be associated with a syndrome that we had never heard of.
It was heartbreaking and terrifying to look at our newborn, who in all ways
seemed healthy to us, and not know what her future would hold with SWS and
her PWB.

Mary Kate was diagnosed at 3 mo as having Sturge-Weber Syndrome after an MRI
scan.  We immediately contacted the Foundation for help and support and they
have been an irreplaceable part of our lives since. She had no
manifestations of SWS (besides her birthmark) until she was 17 months old
and began having seizures.  She had a partial complex seizure while out for
dinner with family.  Had it not been for the Foundation and the information
they provided us with we would not have recognized her seizure so quickly as
it involved her eyes and didn't look at all like what we always thought a
seizure would.  After several terrifying days at Children's Hospital, and
seizures that lasted hours, the seizures were controlled and she had
suffered no irreversible damage.  A few months later, in May of 2008, she
had some breakthrough seizures but with an increase in Keppra she has been
seizure free since.  She does suffer occasionally from headaches and
earaches.  Developmentally she is right on track for her age and although
she sees a pediatric ophthalmologist every 4 months she does not have
glaucoma in her PWS affected eye.  She has undergone 5 laser treatments on
her PWB to lighten it.  Right now the hardest part is not knowing what
having Sturge-Weber Syndrome will mean for Mary Kate's future.

Mary Kate and Sturge-Weber Syndrome have taught us to cherish every single
day and not take one moment for granted.  We know that this syndrome is
highly unpredictable and not well understood and that her future with SWS
will be hard.  So we view every day that is full of her laughter and song as
a true blessing to our family and anyone who knows her.   We continue to
pray that through the Foundation and the awareness they bring we will
someday have a cure for SWS.

 

 

 

Many thanks for your support - and do not forget to forward this to anyone and everyone you think would like to help!

Love,

Greg and Katie

 

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As bumpy as the road has been for Mary Kate it pales in comparison to some other children and families dealing with this syndrome.  Your prayers and support give us hope that for her, the syndrome will be managable.

Your donation will help Mary Kate in many ways. Including awareness and sponsorship for SWS related programs. The Foundation's commitment is to improve the quality of life and care for those affected by supporting individuals and families through guidance, advocacy, referrals and education while building partnerships to research the cause and management of Sturge-Weber Syndrome.