Narvaez was born at 41 weeks. Seven months later Justin had his first
seizure. We had several consultations with various of doctors to no
avail. Only one doctor knew about this rare disease. We sent the blood
tests to Washington DC, and the tests came back positive for Alexander
Disease. The expectations of this disease are fatal. There is no
treatment and no medication to treat this condition. The doctors never
gave us any hope.
Condition Before and After the
Justin Narvaez was an active young child. He stopped
walking, talking or having any type of movements. He did not have head
control. Sometimes Justin was not aware of his environment or was
unaware of who was around him. He stopped eating his favorite foods. I
was able to see it in his eyes that he was done. He was not even able to
stretch his body. But I never lost hope.
I searched and
searched and I found stem cells in China.
I was able to see head
control, and he was understanding more of his surroundings. Little by
little I started to see my son's eyes full of life and hope again. He
started to say a few words like no, Ma, and some other ones. He
communicates with his eyes blinking hard for Yes and shaking his head
for No, or looking down and then looking at you for No.
recently evaluated him for a Dynavox Vmax using Eye Gaze. I was ecstatic
to see my son manipulating this computer. He was turning pages doing
everything he was told. He started to stretch more. He moves his legs
independently and has more sensation in his body to be able to respond
for cold and hot more often. He seems to make facial expressions more.
can actually have a conversation asking him 10 to 15 questions and
more. He seems to be more aware of his environment, following
conversations of others with a lot of interest. He is aware not only of
me, but communicates with his speech pathologists, physical therapist
and occupational therapists.
I know I will continue seeing more
strength in my son. Because I’m a believer in this stem cells treatment,
we are hoping to go again to China to receive more treatment. I am so
happy that I took him to China. He has been fighting the odds and he
will continue to fight. Don't lose hope. There is nothing impossible!