We are just starting this page so please keep checking back for more contacts.
Thank you, AACA Staff
Thank you, AACA Staff
Welcome,
I know this time is scary and you have a lot of questions. Though none of these parents are Dr.s and can give you medical advice, we can provide you with something they can’t. The knowledge of what you are going through. We have been there with our children or ourselves. We know the shock of getting the news and feeling like someone pulled ground out from under your feet and then took the breath out of you. We can talk you through it and give you advice on how to get through it. But most of all we can listen and understand your feelings.
California - Modesto (Central Valley)
Michelle Maruyama
mmaruyama93@yahoo.com
Cleft Lip and Pallet
Son: Cameron
Surgeries @ 2 months, 9 months, 2 years, 4 years & up and coming surgeries @ UCSF
Surgeon - Dr. Hoffman
mmaruyama93@yahoo.com
Cleft Lip and Pallet
Son: Cameron
Surgeries @ 2 months, 9 months, 2 years, 4 years & up and coming surgeries @ UCSF
Surgeon - Dr. Hoffman
California - Modesto (Central Valley)
Denise Rast
drast074@gmail.com
Right Coronal Craniosynsotosis
Daughter: Alexa
Born 2007
Surgery: CVR @ Kaiser Oakland CA
June 24th 2008 (9 months)
Surgeons - Dr. Zovickian, Dr. Pang & Dr. Lee
drast074@gmail.com
Right Coronal Craniosynsotosis
Daughter: Alexa
Born 2007
Surgery: CVR @ Kaiser Oakland CA
June 24th 2008 (9 months)
Surgeons - Dr. Zovickian, Dr. Pang & Dr. Lee
California - San Diego
Sheila Grantham
sheilagrantham@me.com
Right Coronal Craniosynostosis
Daughter: Avery
Surgery: CVR @ Rady Children's Hospital (6 months)
Helmet Therapy for 6 months
Surgeons - (Craniofacial Plastics) Dr. Stephen Cohen, (Neurosurgeon) Dr. Hal Meltzer
* Avery also has SVT (Supraventricular Tacychardia)
sheilagrantham@me.com
Right Coronal Craniosynostosis
Daughter: Avery
Surgery: CVR @ Rady Children's Hospital (6 months)
Helmet Therapy for 6 months
Surgeons - (Craniofacial Plastics) Dr. Stephen Cohen, (Neurosurgeon) Dr. Hal Meltzer
* Avery also has SVT (Supraventricular Tacychardia)
California - Temecula (Riverside County)
Jessica Kahle
jessief9@yahoo.com
Sagittal Craniosynostosis
Daughter: Samantha
Surgery Scheduled for May 3rd 2011
Surgery will be @ Loma Linda University Medical Center Surgeons - Dr. Zouros & Dr. Ray
* Samantha is an identical twin and her sister does not have any Craniofacial Conditions.
jessief9@yahoo.com
Sagittal Craniosynostosis
Daughter: Samantha
Surgery Scheduled for May 3rd 2011
Surgery will be @ Loma Linda University Medical Center Surgeons - Dr. Zouros & Dr. Ray
* Samantha is an identical twin and her sister does not have any Craniofacial Conditions.
Colorado - Denver
Summer Ehmann
summer@craniocarebears.org
Frontosphenoidal Synostosis
Son: Brentley
Surgery @ Denver Children's Hospital on Deceber 21 2010
Surgeons- Dr. Ken Winston & Dr. Lawrence Ketch
summer@craniocarebears.org
Frontosphenoidal Synostosis
Son: Brentley
Surgery @ Denver Children's Hospital on Deceber 21 2010
Surgeons- Dr. Ken Winston & Dr. Lawrence Ketch
Connecticut - Naugatuck
Cindy Sullivan
cindy31699@yahoo.com
Left Coronal Craniosynotsosis
Son: Logan
Surgery: 1st CVR @ Connecticut Children's Medical Center on 7/20/2007 and 7 1/2 months old. 2nd CVR on 2/18/2011 @ 4 years old.
cindy31699@yahoo.com
Left Coronal Craniosynotsosis
Son: Logan
Surgery: 1st CVR @ Connecticut Children's Medical Center on 7/20/2007 and 7 1/2 months old. 2nd CVR on 2/18/2011 @ 4 years old.
Florida (South) - Jupiter
Monika Marino
mail4jaeger@yahoo.com
Metopic Craniosynostosis
Son: Ian Alexander
Surgery - Complete CVR @ Miami Children's Hospital
March 3 2011
mail4jaeger@yahoo.com
Metopic Craniosynostosis
Son: Ian Alexander
Surgery - Complete CVR @ Miami Children's Hospital
March 3 2011
Georgia - Tucker (Atlanta Metro)
Jennifer & Joseph Lenac
jennlenac@yahoo.com
(404)310-4108
Sagittal Craniosynostosis
Son: Eli
Surgery @ CHOA (Children's Healthcare of Atlanta)
CVR at 6 months old
Surgeons - (Neurosurgeon) Dr. Braun Brahma, (Plastic/Craniofacial) Dr. Fernando Burstein
jennlenac@yahoo.com
(404)310-4108
Sagittal Craniosynostosis
Son: Eli
Surgery @ CHOA (Children's Healthcare of Atlanta)
CVR at 6 months old
Surgeons - (Neurosurgeon) Dr. Braun Brahma, (Plastic/Craniofacial) Dr. Fernando Burstein
Indiana - Anderson
Elizabeth Knost
mythisnthatlife@gmail.com
Multi-suture cranio (bi-coronal, sagittal, right coronal at birth, cloverleaf at time of surgery)
Son: Isaac
Surgeries: Anterior CVR Jan 9, 2008 (5 months), Posterior CVR May 9, 2008 (9 months), CVR June 29, 2011 (almost 4)
Riley Hospital for Children
Dr. Jodi Smith, Neurosurgery
Dr. Robert Havlik, Plastic Surgery
http://mythisnthatlife.blogspot.com/2011/05/bugs-big-day.html
mythisnthatlife@gmail.com
Multi-suture cranio (bi-coronal, sagittal, right coronal at birth, cloverleaf at time of surgery)
Son: Isaac
Surgeries: Anterior CVR Jan 9, 2008 (5 months), Posterior CVR May 9, 2008 (9 months), CVR June 29, 2011 (almost 4)
Riley Hospital for Children
Dr. Jodi Smith, Neurosurgery
Dr. Robert Havlik, Plastic Surgery
http://mythisnthatlife.blogspot.com/2011/05/bugs-big-day.html
Indiana - Ferdinand (close to Evansville)
Tammy Wilson
wpgdesigners@yahoo.com
Severe Left Coronal Craniosynostosis
Craniofrontalnasal Dysplasia Syndrome (CFND or CFNS)
Daughter: Emma
Surgery @ Riley Children's Hospital Indianapolis IN on Jan 6 2009 @ almost 5 months old.
Surgeons: (Neurosurgeon) Dr Laurie Ackerman, Craniofacial Surgeon
wpgdesigners@yahoo.com
Severe Left Coronal Craniosynostosis
Craniofrontalnasal Dysplasia Syndrome (CFND or CFNS)
Daughter: Emma
Surgery @ Riley Children's Hospital Indianapolis IN on Jan 6 2009 @ almost 5 months old.
Surgeons: (Neurosurgeon) Dr Laurie Ackerman, Craniofacial Surgeon
Iowa - Boone
Crystal Haglund
haglundfarm@gmail.com
Crouzons Syndrome
Daughter: Audra
Surgery for Cranial Reconstruction in St. Louis in 1994
Surgery for Scoliosis & Chiari Malformation in Iowa City in 2005
haglundfarm@gmail.com
Crouzons Syndrome
Daughter: Audra
Surgery for Cranial Reconstruction in St. Louis in 1994
Surgery for Scoliosis & Chiari Malformation in Iowa City in 2005
Michigan - Brooklyn
Melissa Adams
jdocpony@yahoo.com
Unilateral Coronal Craniosynostosis
Son: Laredo
Surgery @ University of Michigan
Motts Children's Hospital in Ann Arbor
November 2007 (14 months old)
jdocpony@yahoo.com
Unilateral Coronal Craniosynostosis
Son: Laredo
Surgery @ University of Michigan
Motts Children's Hospital in Ann Arbor
November 2007 (14 months old)
Missouri - St. Charles (Suburb of St. Louis)
Tracey Hittler
chloesmom4274@yahoo.com
Positional Plagiocephaly
Son: Collin
Helmet Therapy for 7 months
Metopic Craniosynostosis
Son: Cole (11 months old)
Endoscopic Surgery @ 5 months old
& currently Helmet Therapy
chloesmom4274@yahoo.com
Positional Plagiocephaly
Son: Collin
Helmet Therapy for 7 months
Metopic Craniosynostosis
Son: Cole (11 months old)
Endoscopic Surgery @ 5 months old
& currently Helmet Therapy
Tennessee - Atoka
Rebecca Harber
harber@xipline.com
Coronal Craniosynostosis
Daughter: Julianna
1st Surgery June 26 2008 @ Monroe Carell Children's Hospital @ Vanderbilt in Nashville.
2nd Surgery April 14 2011
(to fill holes)
Surgeons- (Cranial Facial) Dr. Kevin
Kelly, (Neuro) Dr. Tuliapn
harber@xipline.com
Coronal Craniosynostosis
Daughter: Julianna
1st Surgery June 26 2008 @ Monroe Carell Children's Hospital @ Vanderbilt in Nashville.
2nd Surgery April 14 2011
(to fill holes)
Surgeons- (Cranial Facial) Dr. Kevin
Kelly, (Neuro) Dr. Tuliapn
Texas - Cypress (Near Houston)
Lisa Bock
lmichlik@sbcglobal.net
Apert Syndrome
Daughter: Ashley
First Cranio Vault surgery was @ 10 months old @ Med City
Surgeon: Dr. Salyer (WCF)
Ashley has had 22 surgeries to date
She completed her 1st Midface Surgery (RED)
* Ashley also has Decompressed Chiari Malformation, Filed ETV, Shunted Hydrocephalus, Strabismus, Constant Sinus Infections, Depth Perception isses, Hearing loss w/ hearing aides.
* Ashely is a twin!!
lmichlik@sbcglobal.net
Apert Syndrome
Daughter: Ashley
First Cranio Vault surgery was @ 10 months old @ Med City
Surgeon: Dr. Salyer (WCF)
Ashley has had 22 surgeries to date
She completed her 1st Midface Surgery (RED)
* Ashley also has Decompressed Chiari Malformation, Filed ETV, Shunted Hydrocephalus, Strabismus, Constant Sinus Infections, Depth Perception isses, Hearing loss w/ hearing aides.
* Ashely is a twin!!
Texas - Fort Worth
April Weber
aweber820@gmail.com
Left Coronal Craniosynostosis
Daughter: Abby
Surgery @ Cook Children's Medical Center in Fort Worth
10 months old at surgery Surgeons - (Neurosurgeon)
Dr. Honeycutt &
(Craniofacial) Dr. Hubli
aweber820@gmail.com
Left Coronal Craniosynostosis
Daughter: Abby
Surgery @ Cook Children's Medical Center in Fort Worth
10 months old at surgery Surgeons - (Neurosurgeon)
Dr. Honeycutt &
(Craniofacial) Dr. Hubli
Texas - Grand Prairie
Michele Koushan
mlk419@tx.rr.com
Sagital Craniosynostosis
Son: Ryan
Surgery @ Medical City, Dallas August 6 2007 (5 months old) Surgeon- Dr. Fearon & Dr. Sacco
mlk419@tx.rr.com
Sagital Craniosynostosis
Son: Ryan
Surgery @ Medical City, Dallas August 6 2007 (5 months old) Surgeon- Dr. Fearon & Dr. Sacco
Utah - Lindon
Tosha Walker
nursetosha@gmail.com
Craniofrontonasal Dysplasia
Daughter: Lily
Surgeries performed at: Primary Children's Medical Center in Salt Lake City at age 7 months and 4 yrs.
nursetosha@gmail.com
Craniofrontonasal Dysplasia
Daughter: Lily
Surgeries performed at: Primary Children's Medical Center in Salt Lake City at age 7 months and 4 yrs.
Washington - Seattle
Shelby Davidson
shelbocos@hotmail.com
206-660-4045
Sagittal Craniosynostosis
Son: AJ
Surgery @ Seattle Children's Hospital
Surgeons - Dr. Gruss & Dr. Ojemann
shelbocos@hotmail.com
206-660-4045
Sagittal Craniosynostosis
Son: AJ
Surgery @ Seattle Children's Hospital
Surgeons - Dr. Gruss & Dr. Ojemann
Wisconsin - Appleton
Cindy Cole
ladybug_wi@yahoo.com
Sagittal Craniosynostosis
Twins: Carson & Cooper (Both have Cranio)
Surgery @ Children's Hospital of Wisconsin
Carson's 1st CVR- 8 months Aug 2006
2nd CVR - 2 1/2 years Aug 2008
Cooper's CVR @ 9 months Sept 2006
Surgeon: Dr Jensen
ladybug_wi@yahoo.com
Sagittal Craniosynostosis
Twins: Carson & Cooper (Both have Cranio)
Surgery @ Children's Hospital of Wisconsin
Carson's 1st CVR- 8 months Aug 2006
2nd CVR - 2 1/2 years Aug 2008
Cooper's CVR @ 9 months Sept 2006
Surgeon: Dr Jensen