aj
“We feel very fortunate to be AJ’s parents,
as he has taught us so much about
courage, strength and life on this journey.
Along the way, the support we’ve
received from family, friends, and the
Sturge-Weber Foundation has been
extremely remarkable.”
Stories of Hope
On December 22, 2008, we became the proud parents of Allen Joshua (AJ). As
first time parents, we had a lot to learn, even more so when it was explained to us the
birthmark on the right side of AJ’s head and face was actually a port wine birthmark. We
were told AJ would need to see special doctors, and we immediately began our search
for the best doctors available.
Through a referral from a family friend, we found a fabulous dermatologist at Children’s
Hospital of Wisconsin, in Milwaukee, who specializes in pediatric birthmarks. AJ has had
eleven laser surgeries to lighten his birthmark, and we’re thrilled with the progress he’s
made thus far. He has also had several procedures with a pediatric ophthalmologist due
to the involvement of the port wine birthmark in and around his right eye. Fortunately, AJ’s
eye pressure levels have been in the normal range and he does not have glaucoma.
On August 1, 2010, AJ had a series of seizures and was flown by Flight for Life to
Children’s Hospital where he was diagnosed with Sturge-Weber syndrome. Our lives were
turned completely upside down! Doctors experimented with different medications, and
after a week, we were told that SWS is a progressive disorder and AJ’s case was referred
to as a “hard control”. After two weeks at Children’s, AJ went home on phenobarbital and
Keppra, yet we were told he would not be able to remain seizure-free on medications
alone. Doctors at Children’s Hospital believed AJ would need a hemispherectomy in order
to effectively stop the seizures.
We were scared and uncertain not knowing what the future would hold, but we knew
we had work to do to help AJ fight his battle. We began a second opinion search for the
best facilities and doctors in America. After extensive research, and with help from the
Sturge-Weber and Hemispherectomy Foundations, we sought opinions from two other
top-notch medical facilities. We made the most important decision of our lives in choosing
Cleveland Clinic, praying for a miracle. Thankfully, we came in contact with excellent
doctors. They studied AJ’s medical records, ran more tests, and determined AJ did not
need a hemispherectomy. Instead, they recommended a temporal/occipital lobectomy.
On January 13, 2011, AJ underwen Ё