[Dionysus]

Hello All,

I'm new to this site. I came looking for some information, and am hoping the fine folks here can help.

My son, Andrew, was born seven weeks early weighing 2lb 6oz. He had severely dislocated knees which he has had bilateral quadriplasty to correct; Grade 3 Microtia, he wears hearing aids to help him hear, and may require surgery later; and Bilateral inguinal hernias which he has had surgery to correct. He is currently 18 months old and weighs 13lb 12oz. His geneticist suspects he may have Meier-Gorlin Syndrome. We are looking for any information on facilities in the United States that test for this syndrome. Google hasn't been of much help in this regard.

Any information would be greatly appreciated.

Thank you very much!

 

[PikkuMyy]

Hi,

Welcome to MDC! I don't have any personal experience with Primordial Dwarfism, but have you contacted the Potentials Foundation?

http://www.potentialsfoundation.org/

"We are a non-profit, 501(c)(3) organization dedicated to supporting families affected by Majewski (microcephalic) osteodysplastic primordial dwarfism Type II, Type I/III, Meier-Gorlin, and remarkably similar but not otherwise specified microcephalic primordial dwarfism (MPD). Our mission is to enrich the lives of individuals with these types of primordial dwarfism by facilitating and organizing opportunities for families to meet, providing information relating to known health concerns and specialty care, and furthering research efforts.

We recognize many types of dwarfism and short stature conditions exist. We encourage all families affected by dwarfism or short stature to join Little People of America's (LPA) broad reaching community of support, irrespective of a named diagnosis.

We support our mission through annual fundraising activities and the generous support of our donors. Our organization is composed of a group of voluntary, non-compensated friends and families. All donations go directly to supporting our mission."

 

[mommyof three]

Hello, I am new to this site, i ama 38 yrs old Mommy of three(adopted my kids) i was re diagnosed when i was pregnant w/my own two children ( lost at birth) at age 30 w/ Meier Gorlin Syndrome. If anyone has any questions I may be able to help...

 

[mommyof three]

Hello i have Meier Gorlin Syndrome, I am now 38 yrs old. There isn't much at all on this syndrome. I was diagnoss when i was younger w/ many different syndromes , but finally at age 30 was re-diagnoss to this syndrome.

I have asthma which is under control now, but had phneomia and brnchothis all my life.

I also have very tiny ears , which i had reconstructed surgery when i was little.

The best advice i can give you as a adult is if your child need any surgeries get them done as a young child, as he gets older it gets harder, by age 10 i was fed up w/ all the surgeries and dr with them poking at me.

I have lived a productive life!, I am married and have 3 children which i adopted. Just treat your son like he is like anyone else, the best thing my parents ever did. I got no special treatment just because i was tiny.

anything else i can help you with , just let me know, i hope i put you at some ease, because i'm sure it's scary as it was for my parents many years ago.

Thanks Lynn

 

[cherishgracexx]

hi

i was finaly diagnosed with meier gorlin syndrome age 39 . i was very ill as a baby under nurished , severe bronchitus, i was pulled about by doctors and mis diagnosed for years . i have no knee caps very small ears and my breasts did not develop,

I have always been so much smaller than all my family i am now 4ft 11,

ive had surgery on my breasts and my right leg and i am considering have surgery on the left leg but because drs dont realy know what to do i am reluctant to under go any more procedures,

I was bought up as normal with my brothers and sister and was treated no different , this has made me the person i am today i have a full life and enjoy it to the full .

I am on medication for the pain in my legs and have my astma under control atm

hope this helps

 

[ACalanche]

Hi I read your post and my 3 year old daughter was diagnosed with Meier Gorlin Syndrome, when she was 1 years old. Do you have any tips on what kinda special medical treatment I can give her and any other tips would help. My doctors in San Diego, CA don't seem to know what they are doing when it comes to my daughters rare condition.

 

[LanaAussie]

I know this thread is a few years old but any chance any of you are still on here? I would love to talk to anyone else that has themselves or has a child with Meier-Gorlin syndrome.