see.support

Hello friends, family and random readers!

Whew! It has been a while since we have posted probably due to the fact that we, like the weather have been in transition from frozen to thawing out.

I can't think of a better way to get back to posting then to share information and ways to support Ms. Lola (our niece) who was diagnosed with Sturge Weber Syndrome shortly after she was born.

This is Lola

Lola is Mike's sister's daughter and my niece-to-be, she is 5 years old and loves to sing and dance. We have featured Lola along with her brother Henry, and my nieces and nephew's on the blog before because well... what can I say we are so so proud and in love with these little people!!

A big thanks to our siblings for putting in the time and effort to make them fun and spoilable by yours truly :0)

Every year for several years now Lola's Gigi and Pops organize an entire golf tournament to raise money for Sturge Weber Research. This year the tournament is on April 30th, and is sure to be lots of fun. Here, I'll let Gigi (Lola's grandma tell you more)

Dear Family & Friends:

It’s hard to believe that Lola just turned five. She is attending pre-k and is enjoying school. Her teachers adore her and watch her very closely. For this we are extremely thankful. She started having seizures again in February and several of them happened at school. She was taken by ambulance to Children’s Hospital in Little Rock and has been hospitalized several times since then. While these most recent developments are heartbreaking, Lola continues to amaze us all.

Lola participated in two separate Sturge-Weber Syndrome (SWS) research studies this past year. One in August under the direction of Dr. Chugani from Children’s Hospital in Detroit, Michigan and one in March, under the direction of Dr. Comi at Kennedy Krieger Institute in Baltimore, Maryland. Both doctors are leading SWS researchers in the world. After the testing last month, we met with Dr. Comi. She provided Amanda with a wealth of information to her most recent concerns. I must say, she is a one of a kind doctor! I cannot even express my gratitude for how much she has been there for Lola and for her quick response when Amanda calls her for advice.

Unfortunately, this visit brought us some news that we did not expect. We learned that Lola's entire right hemisphere is affected by Sturge-Weber Syndrome. With that being said, we also learned that Lola’s brain is doing something rather amazing. Dr. Chugani from Detroit mentioned that Lola's MRI scan presented a special case because of how her brain was overcoming the depleted nutrients to portions of her brain. Dr. Juhasz said he has never seen anything like it. Both Doctors said she is a "Special Case." They have NEVER seen what her brain is doing. They saw new developments in vein structure happening in her case. Her brain is basically making new "roadways"....with deep veins and many of them. That was very exciting!! They were amazed at her and said she was one of their top 10 patients.

During the studies Lola wanted to know everything they were doing and was interested in all of it. Even though they poked, prodded and sedated her, through it all, she did not complain but instead smiled as if she knew she was part of something really special. She is very brave and we are extremely proud of her.

It is our greatest desire to help Lola and other children like her. So again, I turn to you, my family and friends, for your help by making a donation to continue to support the necessary research to find a cure.

You have our heartfelt gratitude as we strive to make a difference in the lives of those affected by Sturge-Weber Syndrome.

Much Love,

Mitch and Jeanette Ribak

Please go to: www.lolasgift.com to make a donation online.

Uncle Mike and Aunt Mel can't think of anything more important then supporting Sturge-Weber Syndrome research. We encourage you to take a moment to learn more!

Thanks for reading :0)