This post is a follow up to:
Question 9 asked Has your child/family member with MECP2 Duplication Syndrome ever developed pneumonia ….While in the hospital for another reason? …. Continue reading
19 June 2012 Part 1 of this topic addressed the frequency of pneumonia or lung infection episodes among individuals with MECP2 Duplication Syndrome and Part2 addressed the severity of these episodes. Part 3 discusses treatments. Continue reading
19 June 2012 Part 1 of this report discussed the number of episodes of pneumonia and lung infections experienced by children and adults with MECP2 Duplication Syndrome. In this part, information is presented on the severity of these infections and the impact on the individual. Continue reading
18 June 2012 Thank you to all the families to took time to answer a few questions about pneumonia and their family members with MECP2 Duplication Syndrome. This is not a scientific survey and it is not based on a random sample, but rather on families that chose to respond. This could affect the results although the large number of responses in comparison to the relatively small number of known cases suggests that it has some value. In addition, the only demographic data collected was age. This survey does not differentiate between males and females or between individuals with duplications and individuals with triplications. Here are some preliminary results. Continue reading
Happy Fathers Day to all fathers and especially to fathers of boys and girls with special needs! In many ways, I have been privileged to be a father and privileged to be a father of a child with intensive needs. Yes, it has been hard at times, but it has enriched my life a lot. One way that it has enriched it is by putting me in touch with a lot of great families of kids with special needs, and that includes a lot of extraordinary mothers and outstanding fathers.
So to all the dads out there who have stood by their families and done the best they can for them, I just want to say that thank you, you have my respect and you are an inspiration for me and others to try to live up to.
18 June 2012 This poll is now closed. Results will be posted shortly. Please take a few minutes to help us collect data on pneumonia and lung infections. It is important that we collect information from on as many individuals with MECP2 Duplication Syndrome as possible. Please complete one survey for each member of your family who has MECP2 Duplication Syndrome, even if that family member has never had pneumonia. If you know other families who have MECP2 Duplication Syndrome, please let them know about this survey. Thank you.