jaiden andrew
Jaiden Andrew came into the world on November 06, 2008. At three months of
age Jaiden was diagnosed with Sturge-Weber syndrome. Ironically, the same day of
the MRI he had his first onset seizure. Jaiden has all the associated conditions of the
disorder which are port wine stains, seizures, glaucoma, and developmental delays.
He also has port wine stains on various parts of his body and was diagnosed with
Klippel-Trenaunay syndrome because of the staining on his limbs. He recently has been
diagnosed with hypothyroidism and has begun taking medication to treat that.
Jaiden’s MRI confirmed that he has bilateral brain involvement. Both sides of his
brain are very significantly involved with abnormal blood vessels, calcification, and his
brain is not growing well. Comparison of MRIs showed that over time there has been
shrinking of his brain.
It has been a real struggle to control Jaiden’s seizures. He has been hospitalized
approximately 12 times to date for seizures and associated complications. In August of
2009 he experienced status epileptic. Basically his seizures were uncontrollable and to
give his brain a break he was induced into a coma which lasted nine days. Currently he
is on four seizure medications and is on an aspirin regimen.
Jaiden has glaucoma in both eyes. In November 2009 he underwent surgery on his
left eye and had an Ahmed valve implanted because his pressure went up too high. His
right eye is currently controlled with two eye drops. He is severely visually impaired due
“It is known that Jaiden will have struggles
throughout his lifetime and that he will
need assistance. But for right now,
whether Jaiden makes strides in his
development or not, I’m comforted in the
fact that he is usually content and he is
easily consolable.”
to the glaucoma and his neurological condition. Jaiden has been classified as legally
blind. It is hard to engage him visually. He doesn’t track objects but he is believed to see
lights and might have some visual field cuts. He receives vision therapy weekly.
Jaiden started receiving laser treatment to the port wine stain on his face. With
treatment his port wine stain are becoming notably lighter. He will be receiving laser
treatment about every few months for years to come.
Developmentally, Jaiden is very delayed. As a result of his underlying condition
Jaiden suffers from hemiparesis. He uses his left side better than his right. The things
that he can do is roll over, get up on all fours, and hold a 2 ounce bottle with his left
hand. He can also make his way around the room in his walker. Jaiden receives physical
and occupational therapy weekly.
It is known that Jaiden will have struggles throughout his lifetime and that he will
need assistance. But for right now, whether Jaiden makes strides in his development or
not, I’m comforted in the fact that he is usually content and he is easil H