Rett Syndrome in Boys

[AidansMommy416]

My one year old son has Rett Syndrome.  I was wondering if anyone knew of other boys with Rett or if anyone had information they would like to pass along?  Anything is appreciated!!  Thanks!!

[o2passion]

Greetings have you ever signed up for RETTNET my best friendss daughter has RETTs and I am helping her with fundraising so just for the need to get as much information I can about how this disease effects the lives of those with RETTs I read so much great advice.  Well I hope this can help:) If you need more just ask.

Christine

[momaleksandar]

it is believed that my son too has rett syndrome...did you find any information about males with this disorder?  how is your son?  I've been searching and searching...  

[ttatina]

what are your sons symptoms ,i think my son may have this to.

[alrc24]

Hi Everyone,

My son had Rett Syndrome (RS) but it was not until he passed away that we found out.  Scientists and researchers actually wrote a scientific paper, published in a medical publication last year.  My son and his condition was the basis of the study, and in it the researchers discovered that my son had a new form of mutation of the RS disorder; after their discovery of this mutation 17 more children, both boys and girls, had a similar mutation.  I joined the International Rett Syndrom (syndrome) Foundation, and their website is www.rettsyndrome.org.  You can find information about RS, and join the community to share thoughts, ideas, and concerns with other parents who are going through the same (or similar) situations as you.  I hope this helps.  If you want to find out more about my son, including what symptoms he showed prior to his passing (he passed away at 16 months) feel free to ask.  Have a good one.