With help from therapists, family and friends, and from his own personal will and determination, Joey has made substantial progress in the past 4 years. From total assistance to wheel chair, to walker -- He's now walking, very slowly, but upright with arm crutches (there are still balance and coordination issues).

His speech has improved and the more he talks and sings the clearer it will become.

He can clap his hands and tap his foot to the beat of music.

And he can write again, maybe like a first grader but he can write!

Still has occassional body tremors (“the shakes”), most often occurs with weather changes/disturbances, when under a stressful situation, or when in non-typical body positions for a long period of time.

He no longer has double vision.

Very recently (May 20, 2014), Joey has begun IVIG treatment* at home to help boost his immune system. The first IVIG therapy is a four day process, 4-5 hours each day, then to follow will be two daily treatments once a month (back to back treatments) for six months. Hopefully this will give him a boost!

May 26, 2014 - " ITS OFFICIAL!! 5 years ago, I was hospitalized for something no one had a clue about, at that point, I thought the life I was living was over. But with the love and support of my family and friends, I had become a different and better person and met some incredible people along the way, but to this day, I face the thought and battle everyday still to know I do not want this disease back in my body!! And its days like this is sad but also a reminder to see how far I've come!! — feeling blessed."

 
 
With Carmella,
Speech Therapist
 

With Dr. Ulane

Hand Cycling Event April 2012

Matt gives Joey a high 5
after his first cycling event
 
 

Receiving Spirit of Achievement Award from Helen Hayes Hospital
OCCC Graduation 2012

The Graduate with Proud Parents
Hand Cycling Event Summer 2012

 

 

 

 

 

 

 

*IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients whohave decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 3–4 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease theseverity of the autoimmune diseases. It did not work with Joey at that particular time because his body was still producing the “bad antibody”which was working against the “good antibody”.

 
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