Our little Liam was diagnosed in September 2012 with a rare genetic disorder called Angelman Syndrome (AS). Told that those with Angelman struggle with multiple developmental delays, seldom develop any more speech than 15-20 words, and that many are never able to walk on their own, we started down the road on a journey that seemed, frankly, very dismal for a little one with whom we were looking forward to so much. Today, 6 months post-diagnosis, Liam walks with support and has even started taking steps on his own. He’s finding alternate ways to communicate and, thankfully, we’re able to understand and help him. We've found many reasons to rejoice and once again find ourselves looking forward to so much.
As part of our journey we started a blog about Liam, www.liamzplace.blogspot.com. Another part of our journey has been learning as much as we can about his disorder. We have found ourselves incredibly thankful to the Angelman Syndrome Foundation (ASF) for their wealth of information and the support network they provide for families. We recently became aware of their National Walk that is held to increase awareness of AS and to fund therapies, treatments, and, hopefully, a cure. Doug and I have debated LONG and HARD about whether or not to post anything about Liam on a social media site but finally decided that if it will help fund finding the cure we should do it so here I am posting on Facebook. The walk is going to be held nationwide on Saturday, May 18, 2013. San Diego’s walk starts from NTC Park at Liberty Station. Check-in is at 9:00. The walk starts at 10:00 a.m. and is just under a mile.
If you’d like to help us there are several ways you can do it.
1) Pass the word along.
2) To join our team, Liam’s Wings, here in San Diego go to - http://secure.angelman.org/index.cfm?fuseaction=donorDrive.team&teamID=5739
3) To help our team by making a donation to the Angelman Syndrome Foundation go to -http://secure.angelman.org/index.cfm?fuseaction=donorDrive.donate&eventID=592
4) To join a team or register (it’s free) a team in a city near you (see list below) go to –http://secure.angelman.org/index.cfm?fuseaction=donorDrive.eventList&eventType=P,T
Boston, MA, TBD - Boston, Massachusetts
Chicago, IL, Word of Life Lutheran Church - Naperville, Illinois
Danville, VA, Anglers Park - Danville, Virginia
as Vegas, NV, TBD - Las Vegas, Nevada
Long Island, NY, Eisenhower Park - East Meadow, New York
Los Angeles, CA, Griffith Park - Los Angeles, California
Philadelphia, PA, Cooper River Park - Pennsauken, New Jersey
Denver, CO, Adams County Park - Brighton, Colorado
Pittsburgh, PA, North Park Boathouse - Allison Park, Pennsylvania
Breaux Bridge, LA, Park Des Pont Des Pont Breaux - Breaux Bridge, Louisiana
Buffalo, NY, Ellicott Park - Tonawanda, New York
Cincinnati, OH, Theodore M. Berry Friendship Park - Cincinnati, Ohio
Dallas, TX, TBD - Allen, Texas
Hartford, CT, Wickham Park - Manchester, Connecticut
Linden, MI, Linden County Park - Linden, Michigan
Minneapolis, MN, Valley Lake Park - Lakeville, Minnesota
Nashville, TN, Centennial Park - Nashville, Tennessee
Orlando, FL, Celebration Lakeside Park - Celebration, Florida
Phoenix, AZ, Steele Indian School Park - Phoenix, Arizona
Puyallup, WA, Bradley Lake Park - Puyallup, Washington
Sacramento, William Land Park - Sacramento, California
Salt Lake City, UT, Riverfront Park - South Jordan, Utah
San Diego, CA, NTC Park - San Diego, California
St. Louis, MO, Trinity Lutheran - Chesterfield, Missouri
Washington, DC, COPT - Columbia, Maryland
Wichita, KS, Eisenhower High School - Goddard, Kansas
Columbia, SC, Saluda Shoals Park - Columbia, South Carolina
Houston, TX, Rob Fleming Park - The Woodlands, Texas
Most of all, thanks for being our supportive family and friends! This diagnosis and subsequent life change has helped us to realize that it's our relationships in life that are what truly matter!
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