My husband and I had a child, a exquisitely beautiful baby girl.  She seemed to have staring spell seizures and a host of other problems after she started getting her vaccines.

My husband, the biological father, has Moyamoya.  He was diagnosed in 2003, I believe.  His surgery was in 2004, but he had further complications and was air lifted in 2005.

I'm needing anyone's information regarding whether or not we could have passed the Moyamoya onto our daughter.  

His older sister (the only sibling) has Moyamoya and is this year going to be having a surgery to help contain it.

He dropped our daughter last year and the hysteria began when she died.  I tried to tell the EMT, the only person who asked, about his Moyamoya potentially being a problem, but he waved it off when I told him yes he had "the" surgery.

Last I heard there were many types and it wasn't a cure!  She had severe head trauma from this simple short fall and I'm desperate to find out what's going on.

I don't buy the nonsense told me by a few doctors who did NOT know about his disease thanks to that know-it-all EMT.

I really could use some information about what complications could affect an infant if she had it and whether or not that is how it is passed - through genetics, I mean.

Thank you all very sincerely for your help.

Hi Almirati,

Welcome to our MM family.

I’m so sorry for your loss. That’s a pain I can’t even imagine. God love ya!

I wish I had some definitive answers for you, but all I can tell you is what we know thus far about this disease, and that is… the cause of MM is unknown, but because it tends to run in families, researchers think that MMD may be the result of inherited genetic abnormalities. There appears to be a genetic link, thought to having hereditary tendencies and having genetic factors in its pathogenesis, but I've not seen any information, which assigns a specific risk level to passing this along to your children. The conventional wisdom seems to be to watch them for symptoms. Staring seizures is definitely a sign that would merit testing, but with a doctor who has MM experience that would best know the correct path for that particular case.

This is definitely a treatable disease, with an excellent long-term outlook, but the key to that success is getting a doctor with MM experience, preferably a MM expert. There is such a huge lack of knowledge and understanding about this disease throughout most of the medical profession, but there is help out there.

I wish I had more information for you, but unfortunately the researchers don’t have any supported facts yet for this rare disease.

My thoughts and prayers are with you and your family.

Mar

I sent you an email using the email you have on file.  I hope that was okay.  I was able to delve into a bit more specifics that way rather than in "public."  Odd that your niece is named Mandy; my daughter's name is/was Amanda.  We called her Manda-bear because she grunted all the time.

My brother and I have MMD, but our sister does not. My brother's children do not have MMD, nor does anyone else in the family, at least those that have had MRIs. The University of Texas was doing some research on a genetic component of MMD, of which my brother and I were a part of, but I haven't been contacted by them in over a year, after I gave them a DNA test.