Williams Syndrome « Christ Communicator

From the website: “Joni and Friends is built on Biblical truth and the foundation of Jesus Christ. We are about advancing disability ministry and changing the church and communities around the world. The Joni and Friends International Disability Center (IDC) serves as the administrative center for ministries which provide outreach to thousands of families affected by disability around the globe.” (Click here to follow Joni & Friends on Twitter.)

The Elisha Foundation: www.theelishafoundation.org

From the website: “Justin and Tamara Reimer founded The Elisha Foundation in 2005, being spurred on by their eldest child Elisha, who has Down Syndrome. At the special moment of his birth Justin and Tamara recognized the unique call that God had placed on their lives – to minister to families of people with special needs. The Reimers want to see Jesus made much of through the unique blessing of a special needs child. After over eight years of waiting and praying the Lord opened the door of ministry to them and the inaugural Elisha Foundation Retreat was kicked off in December of 2005.” (Click here to follow Justin Reimer on Twitter.)

December 26, 2009

Williams Syndrome Article from Johns Hopkins U.

Posted by Steve Burchett under Williams Syndrome | Tags: Johns Hopkins, Lilly, Williams Syndrome |
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For an article in Arts and Sciences Magazine (from Johns Hopkins University) about Barbara Landau’s research and findings concerning Williams Syndrome, click here.

[HT: Williams Syndrome Web Watch]

October 27, 2009

Lilly Got Glasses

Posted by Steve Burchett under Family, Williams Syndrome | Tags: Disabilities, Lilly, Pictures, Williams Syndrome |
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Lilly's Glasses

September 15, 2009

Disabilities Ministry Blog: The Works of God

Posted by Steve Burchett under Misc., Williams Syndrome | Tags: "The Works of God", Bethlehem Baptist Church, Disabilities, Disability Ministry, Local Church, Syndromes, Williams Syndrome |
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As most of you know, God gave us a child we named Lilly, and she was born with Williams Syndrome. Since her birth, I have sought to understand her life, and God’s purposes in disability, according to what He has revealed in Scripture. That is why I am so happy to have recently found the following Scripture-driven, God-centered, Christ-exalting, joy-producing, hope-filled blog about ministry to those with disabilities: CLICK HERE.

June 9, 2009

I Wrote a New Article & a New Poem

Posted by Steve Burchett under CCW - General, Family, Williams Syndrome, Writings | Tags: Lilly, Pastors, Poetry, Preaching |
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Click the titles:

“Your Favorite Famous Preacher” (Article written for www.BulletinInserts.org)

“Laughs for Daddy” (A poem I wrote about Lilly, inspired by Luke 6:21b and Romans 8:15)

March 31, 2009

“The Truth About Children With Disabilities,” and Other New Articles from the CCW Writers

Posted by Steve Burchett under CCW - General, Williams Syndrome, Writings | Tags: Articles, CCW, CCW - Staff |
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“The Truth About Children With Disabilities” (Patty and I wrote this)

“The Prince Who Became a Nobody Who Became a Prince Again” (for children, by Susan Verstraete)

“The Difference Between Moths and Cockroaches (The Anatomy and Importance of Desire)” (by Daryl Wingerd)

“When Anger Gets the Best of You” (by Jim Elliff)

“He Still Moves Stones” (by James McAlister)

January 28, 2009

Help for the Williams Syndrome Fraternity: Feeding

Posted by Steve Burchett under Family, Williams Syndrome
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Even after all that we have read about Williams Syndrome, Patty and I still don’t feel like we know much. However, my smart and persistent wife might have discovered something today: Lilly is 6 months old, so we are transitioning to baby food. Well, Lilly was doing fabulously, until the past couple of days. She has just fought and fought the spoon, not wanting to eat from it. It has been discouraging because she has to be hungry. Well, Patty tried something today: She dipped Lilly’s pacifier in the baby food, and put it in Lilly’s mouth. Lilly liked that. Patty did it a few more times with the pacifier, and then transitioned back to the spoon. Lilly then gladly accepted the spoon and happily ate all of her food. We’ll see if this continues to keep her settled and eating well. We are wondering if there is someting going on her her brain about order and familiarity.

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