We'd like to thank Justin's mother, Sary, for providing us with this Patient Experience.

Age 11, Puerto Rico and Tampa, Florida

Condition

Alexander Disease

Course of treatment

1 IV with 6 spinal transplants

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Reason for Coming for Treatment

Justin 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 Treatment

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.

They 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.

We 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!

LOVE and PEACE
  Sary Narvaez