On-Line Now! cleftAdvocate's Family-To-Family Connection
© by the individual authors. All rights reserved.
All stories and photographs reprinted by permission of the authors.
If you have a story you think will inspire and educate our website visitors, we'd love to hear from you! Contact us with your story idea! Consider submitting your experience on one of these topics:
Finding out.
Were you caught off-guard in the delivery room? Or did an ultrasound tell the tale during your pregnancy? What did you do to prepare for the birth of your child? Do you have an acquired facial difference?
Surgery.
How did you feel? What were some of the things you wished you knew ahead of time? What did your team ask of you in preparation for the big day?
Feeding issues. Which special feeder and/or feeding technique worked best for your child? How did your baby adapt to cereal and solid foods? How did you feed your child of any age after surgery?
Social concerns. Tips on answering questions that arise when friends, family members or strangers ask "What happened?"
A great doctor or surgeon or team. Tell us how these health care and other professionals have touched your life.
Or....whatever! Your story can be short or long, educational or inspriational...or maybe it's just plain funny! The idea here is to share experiences to help ourselves and others. Contact us to have your story featured on this page!
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This cleftAdvocate page was last updated March 25, 2014
Featured Families - Stories of Craniofacial Care and Inspiration
cleftAdvocate
Contact us to have your story featured on this page!
Mom blogs Faith's Journey
Read about Emily and her friends who were also born with cleft and craniofacial conditions!
UCLP, a twin
born May 23, 2006
Written from a father's perspective
A Samoan family brings their daughter to the US for critical care for multiple birth anomalies
Artist Metin Bereketli joins us in celebrating our incredible families!
Featuring our network families and the premier cleft/craniofacial support program, Pathfinders!
Treacher Collins Syndrome
born September 21, 1940
Crouzon Syndrome
Crouzon Syndrome,
born November 26, 1999
UCL, BCP, Pierre Robin Sequence and Chromosome 12q deletion (q15q21.2),
born September 21, 2005
Crouzon Syndrome,
born April 29, 1989
Embryonal Rhabdomyosarcoma,
Adult, Author of A Face in Time
Visit Judy's website at
UCLP, born October 31, 2002
UCL, BCP, Hypertelorism,
Diaphragmatic Hernia, No Corpus Colusum, born October 31, 2002
a program of ameriface
Midline Cleft, Basal Encephalocele, Nystagmus,
born March 17, 2006
CLP, Hydrocephalus, Amniotic Band Syndrome, born June 3, 2004
PRS/Multiple Anomalies,
born October 23, 2004
Crouzon Syndrome,
born April 4, 1989
BCLP, born March 2, 1987
Visit our Press page to see how AmeriFace and cleftAdvocate are making a difference!
We've partnered with CarePages to help you keep family and friends updated on surgery, growth and more!
Cavernous Hemangioma, adult
Jackie Hafter writes about her personal spiritual journey and being the mother of a child born with Treacher Collins Syndrome. Visit Gabe's website!
Loeys Dietz Syndrome
Born March 17, 2002
Affectionately kown to us as Jylie Bean!
Crouzon Syndrome
Born May 14, 1996
BCLP, EEC Syndrome
Born December 22, 2004
Craniosynostosis, Trisomy 9
Cleft Lip/Palate, Missing nasal structure, Coloboma, Multiple Anomalies
And get your own free website while you're at it!
Crouzon Syndrome,
born April 15, 1994
Pierre Robin Sequence and
Amniotic Band Syndrome (ABS)
born September 25, 1996
BCLP, born July 14, 2003
Meet the House Family!
Personal cleft/craniofacial-related websites of cleftAdvocate's Family-to-Family Connection members.
UCL and Soft Palate,
Born June 4, 2000
A great resource for our Spanish-speaking families!
BCLP, born May 12, 2002
BCLP, born February 21, 2005
Crouzon Syndrome, adult
Messages from families around the country and the world; be
sure to sign the guestbook yourself!
Be sure to watch the Montel Williams Show on Thursday, December 1 when cA Founder Debbie Oliver is presented with the Voices 2005 Award!
Almost 300 smiling faces and growing...join the Gallery!
BCLP/Pierre Robin Sequence, born December 10, 2003
UCLP, born January 30, 1988
Goldenhar Syndrome,
born September 12, 1999
BCLP, born September 26, 1994
BCLP, born January 31, 2002
UCLP/Amniotic Band Syndrome,
born May 14, 2002
UCLP, adult
BCLP, adult
UCLP, born May 14, 2003
UCLP, born June 2001
UCLP, born September 1999
Personal cleft/craniofacial-related websites of cleftAdvocate's Family-to-Family Connection members.
Messages from families around the country and the world; be sure to sign the guestbook yourself!
BCLP, born 1979
CP/Micrognathia
born June 4, 1999
BCLP, born March 2, 1996
Landon (Microform CL) and
Olivia (BCLP)
Twins born September 6, 2002
Crouzon Syndrome
UCLP, born October 9, 2002
Submucous Cleft, adult
BCLP, born August 1, 2001
Tani's Parade Magazine Article, December 2002
Marshall Syndrome,
born August 23, 1965
Stephen's Family
Ashlyn and Aaron, Marshall Syndrome
CL, adult
Incomplete UCL, Complete CP, Amniotic Band Syndrome, born December 22, 2001
Incomplete CL
Born October 31, 2002
BCLP, born June 21, 1979
UCL/BCP, Multiple Anomalies, Born 02/13/03
UCLP, born March 16, 2000
BCLP, born March 30, 2001
UCL/BCP, born August 10, 2000
BCLP, born September 28, 2001
UCLP, born October 27, 1998
UCL/BCP, adult
UCLP, born April 17, 2000
BCLP, age 9
UCLP, adult
BCLP, born October 22, 1999
Cleft Soft Palate, age 4
UCL/BCP, born June 24, 2001
UCL & Alveolar Ridge, adult
BCLP, born February 23, 2002
BCLP, born September 14, 2000
Meet three family members
with clefts
BCLP, born April 22, 1938
Messages from families around the country and the world; be
sure to sign the guestbook yourself!
Also, be sure to enroll in the Family-To-Family Connecton
our on-line support network!
