Sturge-Weber Syndrome. (SWS)
How many of you know what this syndrome is?
My guess is…not many of you.
At least this was the case for me and my family until my niece Anabelle was born.
Without getting completely scientific, let me start with telling you briefly what Sturge-Weber is. According to the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute, Sturge-Weber Syndrome is a rare neurological disorder affecting approximately 1 in 20,000 births. Children with this syndrome typically have a port-wine birthmark on their forehead or the entire side of their face . In addition to the port-wine birthmark, those with Sturge-Weber have abnormal vessels on the surface of the brain which can cause seizures, muscle weakness, and developmental delays.
Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute at Johns Hopkins Medicine have recently discovered the underlying genetic mutation responsible Sturge-Weber Syndrome and their hope is that they can now move towards more targeted therapies for those who live with this syndrome.
Now let me tell you about my best friend and niece Anabelle, who will be 9 years old this year. She is the most beautiful, smart, creative, strong, and ambitious person I know. She has a love and passion for her friends, family, and everyone she meets. Anabelle also has Sturge-Weber Syndrome.
Anabelle had her first seizure shortly after she turned one. That’s when we began to educate ourselves on SWS. It was something none of us knew anything about at the time but we wanted to make sure we were educated in order to give her everything she needed. Anabelle’s parents (my brother and sister-in-law) have and are doing everything possible for Anabelle to have the best life she can.
We are praying that since research has discovered the cause of SWS, the cure and more effective treatments will soon be discovered as well.
My sweet Anabelle
Getting our dance on
Me and my flower girl
Anabelle with her mom (Julie), dad (Alan), and brother (Burton)
In the meantime Anabelle, our family, and other loved ones of those with Sturge-Weber Syndrome, (see one of my favorite research efforts here) are raising awareness about this syndrome and raising money to support the advancement of research for this disorder.
One Saturday afternoon, my niece had some girls from her class over. They decided to set up a table outside and sell rainbow loom bracelets and lemonade. I found out later that it was a huge success, not only because these rainbow loom bracelets are cool, but Anabelle was going to give all the money they raised to her SWS doctor, Dr. Anne Comi, who is the director of the Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute.
Working hard for something and not seeing instant results can be a hard concept for children to grasp. But Anabelle understands that not only will her effort help others with SWS, but also that she will one day personally benefit from the advancement of research.
I know, I know. there are always stories on the news about a child who went through some miraculous effort to raise money for a charity, which is so fantastic, but I guess those stories felt distant to me since I didn’t know the child who did the fundraising.
I recently traveled to see Anabelle and the whole family because I missed them all terribly. While I was there I had Anabelle show me how to make these cool rainbow loom bracelets. One of our favorite things to do together is anything crafty and artistic, so this was right up our alley. Of course, after I made one of these bracelets I was hooked and wanted to make more.
After I got home from my visit, I decided that I wanted to help Anabelle out. I bought my own rainbow loom and rubber bands and started making bracelets for Anabelle to sell. So I guess now my niece has a distributor all the way in Lubbock, Texas.
Anabelle made bracelets for my husband Kent and me. They were red and black since we both went to school at Texas Tech. Kent wears his to work everyday and is SO proud to tell everyone that his niece made it for him. Some of the guys he works with like them so much they have asked to buy some.
My plan with all the bracelets you see below is to send them to her so she can get busy selling them. In addition to these colors, I have also purchase red, black, camouflage, and even pink camouflage rubber bands to appeal to all the Lubbockites.
My hope is to sell some locally and assist Anabelle in raising money to advance research for Sturge-Weber Syndrome.
Take a look at some of the bracelets and colors below!
Anabelle sells these bracelets for $3 each.
These glow in the dark.
These are fun bright neon colors.
The purple and turquoise combination are the colors
Anabelle has chosen to represent her foundation.