STRENGTH IN NUMBERS: Local families find support to cope with rare neurological disorder Sturge-Weber
Posted: 01/26/2009 12:05:46 PM PST
It's all thanks to a grass-roots community-building effort — and also to the wide reach of the Internet.
Locally, that effort is being championed by Rachel Waters, an Azusa mother who has joined the ranks of people looking to find and facilitate support for Sturge-Weber families.
Waters helped organize a meet-up in Pasadena earlier this month for Southern California families affected by Sturge-Weber. The event brought nearly a dozen families from regions as far away as Edwards Air Force Base.
Waters, 4, of Azusa, is entertained by balloons during a Sturge-Weber
Syndrome California Family Day (Watchara
Aiden Waters, 4, of Azusa, is entertained by balloons during a Sturge-Weber Syndrome California Family Day
(Watchara Phomicinda/Staff Photographer)
Facial port-wine stains and glaucoma are common characteristics among individuals with the disorder, according to the Sturge-Weber Foundation. The stain is caused by an overabundance of blood vessels around the trigeminal nerve in the face, and abnormal blood vessels also form on the surface of the brain on the same side.
Those cerebral blood vessel formations can lead to loss of nerve cells and calcification of brain tissue. Neurological symptoms include seizures that begin at a very young age.
At the meeting, held at Kids Klub on South Raymond Avenue, adults — some grown men and women living with Sturge-Weber, others the parents of children with the syndrome — swapped stories over pizza and sandwiches. Nearby, the youngsters climbed on bouncers and took some light tumbles, made even safer by the playhouse's multicolored foam flooring.
Similar regional events — and also the much larger SWF International Conference — are typically held each year in different parts of the country.
For Waters, the mother of 4-year-old Aiden who in August 2008 underwent a radical hemispherectomy to put an end to seizures caused by the condition, the meet-up was the first time she was able to connect with so many Sturge-Weber families in person.
Waters said she learned how vital those connections can be when doctors told her Aiden would need to have brain surgery.
Frightened and looking for support, she found resolve in corresponding with another mother, whose daughter had gone through the same procedure.
"When we saw how well she was doing, that gave us a lot of hope," Waters said.
The meeting also marked the first time that Aiden got to be around and play with other children who are just like him, she said.
Since his surgery, Aiden's progress has improved with each passing day, and at Kids Klub, he roamed unaided around the halls and play areas.
"Six months ago, it took him six minutes to walk the length of the hall at school, with assistance," Waters wrote recently on the blog she maintains to chronicle Aiden's life. "This week, he did it in just over a minute, completely by himself. He is learning how to ride a tricycle and he can go up the stairs by himself. ... It's just amazing."
Aiden has also become more verbal, attempting different sounds and words, and he is much more aware of his surroundings, she said.
"It's almost as if the clouds have been cleared away and he can see things the way they are supposed to be seen," she said.
For the Nicholson family of Santa Clarita, it's a familiar story.
Waters and son Aiden, 4, of Azusa, during a Sturge-Weber Syndrome
California Family Day at Kids Klub in Pasadena on Saturday, Jan. 17, 2009. (Watchara
Rachel Waters and son Aiden, 4, of Azusa, during a Sturge-Weber Syndrome California Family Day at Kids Klub in Pasadena on Saturday, Jan. 17, 2009.
(Watchara Phomicinda/Staff Photographer)
"We like to show her off a little bit," he said with a grin.
Rebecca normally wears makeup to cover her facial birthmark, but at the meeting she decided to go without. She wanted the younger children to see that she looks just like them, Rebecca said.
That's something Anita Miyake of Placentia hopes her daughter Alisha notices.
"It's just such a rare condition," Anita said, as Alisha and her sister, Brianna, ran off to play on a giant, inflatable slide.
When Alisha was just 2 years old, she suffered a stroke, Anita said. It was the first major symptom of Sturge-Weber to appear in her, other than the deep-colored birthmark on the left side of her face.
Now Alisha is 5, and her parents said they feel lucky that her condition hasn't worsened. If anything, it's improved now that she's on a carefully monitored aspirin regimen.
"Now she's getting to an age where she's really appreciating being around others with birthmarks," Anita said.
That sense of ever-growing community is a far cry from what Susan Cohen Grossman of Reseda encountered when her son David was born with Sturge-Weber 36 years ago.
"I had never met anyone else with Sturge-Weber until the first conference," Grossman said. "I was told that my son needed to be in an institution, that he needed to be put away."
Even at the library, there was very little information on Sturge-Weber — just a few pages in a medical book on rare neurological disorders.
A lot has changed as the foundation's mission is increasingly aided by the Internet.
From remote corners of Southern California, the country and even the globe, Sturge-Weber families are connecting and communicating, building each other up by sharing one hard-learned lesson at a time.
Grossman, for example, helps advocate for children with Sturge-Weber in the education system. With decades of experience in the field, she helped Waters know what to ask for when it comes to Aiden's schooling. And now Aiden has a one-on-one aide in the classroom.
Armed with the powerful tools of Internet access and knowledge of Web site development, Waters is part of the latest chapter in that story.
She's built a Web page dedicated to Aiden and his journey with Sturge-Weber (www.aidenslife.com) and started a blog (aidengregory.blogspot.com) with personal updates on his progress. She also redesigned the Web site for the Hemispherectomy Foundation, an outside organization, but one closely related to Sturge-Weber.
Recently, Waters has been communicating with a 17-year-old boy in Greece, who contacted her after viewing a video of Aiden that she'd posted on YouTube. The teen's sister has Sturge-Weber, and the family didn't know where to turn for help.
"He told me, `We thought we were the only ones,' " Waters said.