This post is intended only for Members for the MECP2 Duplication Syndrome Facebook Family Talk Group. Group membership is limited to family members of individuals with MECP2 Duplication Syndrome
Our MECP2 Duplication Syndrome Facebook Family Talk Group Photo Directory currently includes photos and some information about 167 individuals. It has been about a year since we invited photos, so I am renewing the call for photos at this time.
To include your child (who has this syndrome) in this album, please e-mail a photo to firstname.lastname@example.org
Please include the child’s name, date of birth, and the country where you live. If you would like, you are also welcome to include the names of family members, city and state, date of diagnosis, and other relevant information.
If the pictured is deceased, you may choose to indicate when they passed away.
You can use the same e-mail address address to send a newer photo or update previous information, but only one photo of each individual will be included in the directory so newer entries will replace older ones. NOTE: if you are updating a photo, you will probably need to include all the associated information as the previous information normally is lost when the old photo is replaced.
To view the directory album, you must be signed into facebook and be a member of the MECP2 Duplication Syndrome Family Talk Group. The directory album can be found at here.
Brothers and sisters growing up with sibling with severe and multiple disabilities often are required to make sacrifices that most other children do not have to make. Parents often feel guilty about neglecting their other children when they are overwhelmed with the urgent demands of a child with ongoing urgent needs.
Before going on with this discussion, I need to issue a disclaimer and apology. Writing about this topic, it is tempting to present it like I have it all figured out, like everything is and always was under control, and like I always handled things perfectly. Unfortunately, that is not the case, and I am sorry for those times that I fell short as a dad. Nevertheless, I do think there are a some thoughts that are worth sharing, and I am passing them along for what they are worth.
At times. it is hard on siblings growing up with a brother or sister with intensive needs. It is also difficult for parents who want to be fair to all their children, when one has needs that are so much more frequent and urgent than the other. Continue reading
Winter 2015-2016 has been heartbreaking for families affected by MECP2 Duplication Syndrome all around the Northern hemisphere. So many of our affected family members have been seriously ill, in critical care, and sadly some have not survived. It has been crushing for families directly affected, and even those not directly affected feel some of that pain. It has been hard to keep the light of hope burning for many of us.
As the father of one of the lucky ones, who have so far made it through this winter untouched, I feel empathy for the many families who are suffering now— but I also feel guilty about our family’s good fortune and feel afraid that our luck will change. It is really hard to know what to say to the families that are hurting so badly right now. No words seem adequate. As difficult as it may be at times, we need to hold on to hope, no matter what comes. Continue reading
The MECP2 Duplication Syndrome Family Talk Facebook Group
This is a private Facebook group that links approximately 750 individuals from families affected by MECP2 Duplication Syndrome from around the world. Some members of the group are regular Facebook users while others become Facebook members solely to access the family talk group. Group members share practical information and social support.
Parents, Grandparents, Siblings, and other relatives of children or adults with MECP2 Duplication Syndrome are welcome to join the group. Since family can be loosely defined, parents and guardians can choose to extend memberships to friends, caregivers, or others who they consider to be part of their families. Decisions about these “extended family members” are up to the parents or guardians of the individual with the syndrome.
Researchers or professionals in health, education, or other disciplines who are working in this field may request membership. These requests will be discussed among group members via the Facebook group, and approved only if their is strong support for confirming membership.
To join the group, you need to follow these steps: Continue reading
Great new video highlights the kids with MECP2 Duplication Syndrome and their families.
This great video was released on Christmas Day 2015. Thanks to Joe Mendoza and his colleagues for another great video… and of course, thanks to all the families who participated.
Overall this Cleveland Newstory about Cherysh Smith does a good job.
This 5-minuted video from Joseph Mendoza does a superb job of telling the story of children and adults with MECP2 Duplication Syndrome and their families.
I am sorry that I have been neglecting this blog. I’ve just been trying to balance too many things. This excellent video from Andrew Solomon is definitely something that parents of children with severe disabilities need to access.,,, and it inspired me to try to catch up. See previous post on his book, Far From the Tree, for more on the book this is based upon.
Thank you to all the families of individuals with MECP2 Duplication Syndrome that have made the effort to communicate with and support other families.
Thank you to all the families of individuals with MECP2 Duplication Syndrome that have worked so diligently to spread public and professional awareness of the syndrome. Continue reading
Just a week ago, I posted an entry on the Agony and Ecstasy of parenting a child with severe and multiple disabilities. The next day, a friend was telling me about a remarkable interview he heard on CBC radio with Andre Solomon, author of Far From the Tree: Parents, Children and the Search for Identity, that dealt with some of the same things. I was interested enough to check out one of many interviews with Solomon on the the internet, and I was 50 impressed with the interview that I bought the 996-page book.
Since this book has been a best seller for about a year now, I am a little embarrassed that I am just hearing about it. I haven’t finished it yet, but I have read enough to say that it is truly wonderful and important reading for anyone who wants to understand parents of children with intensive needs or any parent whose child is exceptional in some significant way Continue reading