www.chiariact.org

               

.P.O.Box 300022, Jamaica Plain, MA  02130

​​Contact Us: +1-844-EGA-4ACM (1-844-342-4226) or info@chiariact.org

GET INVOLVED!

WHO IS EHRICK?

Learn how you can get involved with Ehrick Garion's Act.

Ehrick Timothy Lighty

3/20/90 - 2/18/00


Ehrick's headaches were so severe, he would vomit and pull his hair. After receiving at CT scan, a pediatric neurologist stated that he was having cluster headaches due to growing pains. They tried everything from diet to medication. Finally, an MRI revealed Arnold Chiari Malformation. The neurologist was dismissive, "It's not a life or death situation." February 16, 2000, Ehrick was found on the floor. He was rushed to the hospital, with a brain hemorrhage. He was pronounced dead February 18, 2000. His mother, Lissa laid in the bed with him and felt his last heartbeat. A memorial marker was placed by his classmates.  

 

Chiari 1 Malformation (There are several types) is a serious neurological condition, that is either congenital or acquired, where the cerebellum (back part of the brain) or brainstem fall down into the spinal column (through the hole in the bottom of the skull), or with Chiari 0, there is no herniation. Symptoms include severe headaches and dizziness, head/neck pain, increased pressure on the brain, weakness/paralysis in limbs, numbness/tingling, seizures, cognitive issues (memory/language/attention problems, decreased IQ) and so much more. Fatal complications include problems involving the brainstem – cardiac arrest, cerebral hemorrhage, sleep apnea (which have caused many of the deaths). The condition affects 1 in 1000 people (especially children and young adults), but it is likely more common. The condition is not covered well in the medical community and it is often misunderstood, delayed or misdiagnosed, or not recognized as a serious, too often fatal condition, and taught with outdated information from old research.​

Garion Michael Barber

1/21/00 - 3/29/08


Garion (pronounced Garon) had trouble with his eyes, shortly after his birth. At 16 month, he was diagnosed with focal seizures, which were affecting his eyes. He started medication at 18 months old. At 6 years old, he would mention having a headache, seeing double and tingling in his hands. Finally, in 2008, he had an MRI, which the neurologist stated, "Looks good! The cerebellum comes down just a little further down than normal, but it's nothing to worry about." Nine months later, Garion passed away in his sleep, from central sleep apnea. The medical examiner asked Garion's parents if they had heard of Arnold Chiari Malformation, and they hadn't. The doctor withheld the diagnosis. Had they known, Garion's parents would have requested a sleep study and researched the condition further. 

WHO IS GARION?

WHAT IS CHIARI MALFORMATION?

Together, we can make a difference

Educate, Advocate, 

Legislate 


Building a better future for the lives of people with Chiari Malformation and their families.


MISSION

Ehrick Garion's Act is a medical advocacy 501 (c)(3) non-profit organization and awareness act, formed to educate, advocate and legislate changes in the medical community, the government and the public about Chiari Malformation. We are a strictly volunteer-based non-profit organization and 100% of our profits go back into the community. We are focused on the different impacts of having this type of incurable neurological condition. For infants and children, there is a need to have pediatricians well versed in Chiari Malformation. Research has shown that the malformation may be a cause of SIDS (Sudden Infant Death Syndrome) and fatal sleep apnea. For adults, there is also a need to educate government social service agencies on how crippling this invisible condition can become, and to change the methods used to identify Chiari Malformation by radiologists and doctors from arbitrary standards developed last century to national standards based on current sound medical research.