Schizencephaly is NOT a Disease. It is a Condition of the brain. Ethan's story was shared because of the fight the families have every day because of No research being done due to the rareness of the condition.
This is a story about a special little boy named
Ethan Wayne Randolph
Ethan was born with a brain condition that is very rare.
But you will definitely never forget it when you meet Ethan.
Because he is a special miracle baby.
The doctors did not think Ethan would live very long.
Ethan had a MRI when he was less than 12 hrs old
He had botox when he was 2 years old.
Ethan continues to get stronger and smarter every year.
Ethan is now 5 years old and wants everyone to know about
There is No cure because No research is being done!
Ethan goes to therapy to help him improve his motor skills
Ethan loves his therapists at Cole Pediatric Therapy.
And Ethan is improving every week.
Treatments are expensive and consists of
Physical, Occupational, Speech, Aqua and Constraint therapy.
Many children have to take numerous drugs to help stop
and prevent seizures. Ethan is one of the lucky children
that does not have to take several medications daily.
But he does have to go to therapy almost daily.
On March 24th 2013.
We celebrated Ethan's Schizencephaly Awareness Music Benefit
at Opal Divines on South Congress in Austin, Texas
first National Schizencephanly Awareness Event.
On September 21, 2013
Ethan and Brett
went to Melia Moore's Lissencephaly Benefit.
They both got their face painted by Jelly Bean the clown.
Ethan surgery September 2014
Ethan & Larry Randolph October 2014
CLICK HERE to learn about Melia Moore and Lissencephaly
CLICK HERE FOR CHART ON SCHIZENCEPHALY CHILD
Fun Facts About Pirates
Email us for more details
CLICK HERE For Information Photos of Ethan
December 2013 ~ Ethan receives the Santa Award for being a brave little warrior for Schizencephaly Awareness. ~ Name the Red Parrot
JCI LIVE AUSTIN – RARE DISEASE DAY AWARENESS
Date: Thursday, Feb 27, 2014
Event Address: 1143 Northwestern Avenue, Main Studio, Austin, TX 78702
Organized By: JCI Productions
Contact Name: Mauri Gandy
JCI LIVE AUSTIN is a weekly live television program which airs on Thursdays at 8 to 9 PM on Channel Austin, and re-airs at various times later throughout the month. On February 27th we will bring awareness to RARE DISEASE DAY by having 5 year old Ethan Wayne Randolph and his mother Terrie Randolph of Schizencephaly Awareness to tell about the rare disease of Schizencephaly that Ethan has and the day to day challenges that families have when their children have a rare disease. You will be able to watch in Austin cable providers Time Warner, Grande, AT&T U-Verse and online streamed around the world at http://channelaustin.org/watch/streaming11
Above article was found at:
Video of Ethan at Therapy was on RareDisease Day website