STRENGTH IN NUMBERS: Local families find support to
cope with rare neurological disorder Sturge-Weber
Posted: 01/26/2009 12:05:46 PM
PST
Families
whose lives have been touched by Sturge-Weber syndrome are finding strength in
numbers, despite the rarity of the congenital neurological disorder.
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.
Aiden
Waters, 4, of Azusa, is entertained by balloons during a Sturge-Weber
Syndrome California Family Day (Watchara
Phomicinda/Staff Photographer)
The symptoms of Sturge-Weber are
widely varying.
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.
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)
Rebecca Nicholson was just 9 months
old when she had surgery to remove the damaged right hemisphere of her brain.
She is now 17, and her father, Cameron, said he is "very proud" of
her and how far she's come.
"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.