Who We Are:

MAPS: Microphthalmia Anophthalmia Parent Support is a volunteer support group started in 2007 by a group of nine moms, who live all across the US.  The MAPS moms met via an internet message board for families of children with bilateral anophthalmia or bilateral microphthalmia (for more information about this group, see our Message Boards page.)

Below we will tell a little about our children, to give you an idea of the diversity of experiences, personalities, conditions, treatments, and options that exist for children with anophthalmia or microphthalmia.  Our goal is to show you that there is no one "correct" answer for any question or situation relating to A/M.  Every family and child is unique, and we all are empowered to make the choices that work best for our family and our child.   

Our "Founding Moms" are:

Amy, mom to Max (Missouri):

Max enjoys playing baseball and also takes drum lessons and is a spectacular player. He was born in 1998 and has bilateral anophthalmia and aspergers (an autism spectum disorder).  Max has had three dermal fat graft surgeries on his eyes, as well as hydrogel implants.  Max attends his local public school. 

Gwen, mom to Ivey, (Georgia):

Ivey amazes everyone who meets her, and has astonished all the medical professional. She is a happy, growing, thriving beautiful girl.  Ivey was born in 2006 and has bilateral anophthalmia, a double cleft lip and palate, a trach and a feeding tube, the result of  a partial deletion of Chromosome 21. You can read more about Ivey on her blog.

Heidi, mom to Aaron "AJ" (Massachusetts):

AJ is a music loving young man.  If he is not playing his piano, he is singing, and he recently sang the National Anthem at a high school basketball game!  AJ was born in 2001 and has bilateral microphthalmia with no optic nerves.  AJ wears prosthetic shells over his micro. eyes.  He also has flat feet and wears AFO's. AJ attends his local public school.   

Jennie, mom to Max (Virginia):

Max is a ticklish, happy toddler who loves Elmo and any version of Twinkle Twinkle Little Star.  He was born in 2005 and has bilateral anophthalmia.  Additional diagnosis include metatarsal adductus (turned in feet) , as well as choanal atresia (only one side of his nose allows air to pass through) and a Chromosome 18 variation. 

Jill, mom to Ella (Ohio):

Ella is a happy little girl, who loves to be read to, sung to, and rocked in her rocking chair.  She has a beautiful smile with her new teeth coming in, and she loves to laugh!  Ella was born in 2006 and has bilateral anophthalmia. She was also born with a cyst in her right eye socket.  She started with conformers and is progressing to painted prosthetic eyes. 

Megan, mom to Ava (Pennsylvania):

Ava is a happy, silly toddler, walking like a champ and talking up a storm.  She was born in 2005 and has bilateral anophthalmia with some light perception.  Ava started wearing conformers at 8 weeks of age and now wears prosthetic eyes.  She will attend the Western PA School for Blind Children preschool beginning in February, 2008.

Michelle, mom to Matteo (Massachusetts):

Matteo is an active young man who enjoys gymnastics and skiing.  He was born in 2002 and has bilateral anophthalmia.  He was also born with a cleft lip and palate and later developed central hypothyroidism and a growth hormone deficiency.  He needs a daily shot to recitfy this.  Matteo started with conformers as an infant and now wears prosthetic eyes.  Check Matteo and his brother Marco at www.faso.net.

Sheila, mom to Grace (Washington):

Grace is a very social young lady, who enjoys swimming and taking piano lessons. She was born in 1998 and has bilateral anophthalmia, a seizure disorder and one flat foot.  Grace wore conformers as an infant but they were not successful, and her family elected not to pursue orbit expanding surgeries, so she does not wear prosthetic eyes. Grace is homeschooled.

Tera, mom to Emma (Texas):

Emma is a beautiful little girl, who loves to dress up, wear hats, be a ballerina, and has a wonderful, active imagination.  She was born in 2000 and has bilateral anophthalmia and wears AFO's on her feet.  Emma wore conformers as an infant and now wears prosthetic eyes.

What we offer

• Support
• Connections
• Community
• Understanding
• Experience
• Resources