FAQs
Frequently Asked Questions
Q: What is "Aicardi-Goutieres Syndrome"?
A: Aicardi-Goutieres Syndrome (AGS) is characterized by severe neurological dysfunction in infancy, leading to progressive microcephaly, spasticity, dystonic posturing (contorted body due to weakened muscles), profound psychomotor retardation and often death in early childhood. This is an extremely rare disease with no more than 40-50 cases worldwide and only one case (our Gavin) in the Western United States. It's causes are thought to be genetic. The name of this disease is the last names of the two French doctors (Jean Aicardi and Françoise Goutières)that discovered it in 1984. For more detailed information, please see our links page
Q: What are the other symptoms of Aicardi-Goutieres Syndrome?
A: The primary symptoms are listed below-
- progressive atrophy of the brain with enlarged ventricles and sulci
- calcifications of the basal ganglia of the brain
- elevated levels of white blood cells in the spinal fluid
- elevated levels of alpha-interferon in the spinal fluid and sometimes in the blood. Alpha-interferon is an immune protein made by cells to combat viruses.
- cortical blindness, ocular jerks, and poor or no eye contact
- acquired microcephaly
- feeding difficulties, reflux, and vomiting
- white matter hypodensity of the brain
Q: What is being done for Baby Gavin?
A: Unfortunately, there is no cure and no known treatments for this disease. The brutal reality is that it is often fatal within the first year of life. Those that make it past the age of one year often have severe brain disfunction. There are many different forms of this syndrome caused by at least 5 different generic markers. Gavin is being tested to see which precise form of the syndrome he has. Once these tests are in, the picture will be a bit less fuzzy.
Q: What is Baby Gavin's current condition
A: Gavin's mother (Kim) has a BLOG on this web site with periodic entries on Gavin's condition. This will always be the latest information available.
Q: What can I do to help?
A: There are a number of things you can do to help-
Pray for Gavin and his family - Never underestimate the power or prayer to heal the prayee as well as the prayor
Go to the ePrayer page and send the family an inspirational message of hope and support
Send a Donation to the following address:
Gavin Lund Support Fund
C/O Wells Fargo Bank
4180 Bonita Road
Bonita, CA 91902
Add the account number (6019054656) to the end of the "Pay to the order of" line