TNSSG member Mette Baser wrote an article that was published by MORGENAVISEN
JYLLANDSPOSTEN on February 9, 1998. The article was titled A better life with the Net and
describes how the Internet helped Mette improve treatment for her affected child.
But Wanda Robinson knew. An American mother in the same
situation as Mette, only 4000 kilometers and a mouseclick away.
She opened her homepage for parents around the world. From
being seven, who daily wrote together, they are now after a
single year over 45.
The American mother put Mette's daily life into action. Good
advices came pooring out of the screen. Mette could act. Be
a mother.
"We discuss everything. Shall they get growth hormones?
Is it better not to do it? We help each other to sort information
and give each other hints about how for example you could
keep an eye on signs of retardation, that many of our
children might suffer from," tells Mette, who has learned
"an awfull lot". Also, that her Mine is not as hard effected
as many others.
Raising Alyssa.
Faith drives family as child with Noonan Syndrome grows.
By ANDREA KENNET Of The Daily Astorian.
Finding out more about Noonan Syndrome.
When 9-year-old Darcie Robinson was diagnosed with Noonan Syndrome last year, her mother,
Wanda, found no one to turn to for emotional support and information about the disorder.
So, the Maryland mother started The Noonan Syndrome Support Group Inc., a nonprofit group offering support, networking
and information to people affected by the disorder, their families and to medical professions.
"People with Noonan Syndrome want the same things out of life as everyone else, to live life to the fullest and reach their true
potential" Robinson said.
The Noonan Syndrome Support Group was featured in the September 22, 1997 edition of the
Carrol County Newspaper.
Medical professionals and parents from all over the world credit Wanda Robinson of
Upperco with using a unique combination of '90s Internet technology and old fashioned
volunteerism to help advance science and unite Noonan's families.
``It takes a while for these rare syndromes to get in into the medical literature and become
generally recognized,'' said Dr. Jacqueline Noonan, the Kentucky cardiologist who
discovered Noonan's syndrome. ``It's generally the parents of patients who are the
go-getters to spur public awareness. What Wanda is doing is great.''
