Alexa's Appeal For Craniofacial Awareness
  • Home
  • Meet Alexa
  • Alexa's Appeal Annual Event
    • 2017 Alexa's Ace for CCA
  • Childrens Craniofacial Association
    • CCA Annual Family Retreat
  • DONATE
  • 4th of July Parade
  • Craniofacial Syndromes
  • Meet Alexa's Friends
    • Stories of Strength
  • Cranio Family Support Group
  • Cash Levy
  • 2017 Sponsors & Donators
  • Contact
  • WE SUPPORT...
    • Choose Kind
    • World Craniofacial Foundation
    • Cranio Angel Network
    • FACES
    • Jorge Posada Foundation
    • Cranio Care Bears
    • Torey's Distraction
    • Facing The World
We are just starting this page so please keep checking back for more contacts.
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)

Picture
Michelle Maruyama
[email protected]


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)

Picture
Denise Rast
d[email protected]

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

Picture
Sheila Grantham
[email protected]

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)

Picture
Jessica Kahle
[email protected]

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

Picture
Summer Ehmann
[email protected]

Frontosphenoidal Synostosis
Son: Brentley
Surgery @ Denver Children's Hospital on Deceber 21 2010
Surgeons- Dr. Ken Winston & Dr. Lawrence Ketch


Connecticut - Naugatuck

Picture
Cindy Sullivan
[email protected]

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

Picture
Monika Marino
[email protected]

Metopic Craniosynostosis
Son: Ian Alexander
Surgery - Complete CVR @ Miami Children's Hospital
                                 March 3 2011


Georgia - Tucker (Atlanta Metro)

Picture
Jennifer & Joseph Lenac
[email protected]
(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

Picture
Elizabeth Knost
[email protected]

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)    

Picture
Tammy Wilson
[email protected]


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

Picture
Crystal Haglund
[email protected]

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

Picture
Melissa Adams
[email protected]

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)

Picture
Tracey Hittler
[email protected]

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

Picture
Rebecca Harber
[email protected]

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)

Picture
Lisa Bock
[email protected]

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

Picture
April Weber
[email protected]

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

Picture
Michele Koushan
[email protected]

Sagital Craniosynostosis
Son: Ryan
Surgery @ Medical City, Dallas August 6 2007 (5 months old)              Surgeon- Dr. Fearon & Dr. Sacco


Utah - Lindon

Picture
Tosha Walker
[email protected]

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

Picture
Shelby Davidson
[email protected]
206-660-4045

Sagittal Craniosynostosis
Son: AJ
Surgery @ Seattle Children's Hospital
Surgeons - Dr. Gruss & Dr. Ojemann


Wisconsin - Appleton

Picture
Cindy Cole
[email protected]

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


Powered by Create your own unique website with customizable templates.