Category Archives: Family

Cleveland News Story

Overall this Cleveland Newstory about Cherysh Smith does a good job.

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Video: MECP2 Duplication and Hope for Families

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.

Andrew Solomon on Parents of Children with Severe Disabilities

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.

2014 New Years Message for Families

envelopeThank 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

Far From the Tree

FFTTJust 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

Amelia Rivera Receives Kidney Transplant

Amelia Rivera is home after receiving a kidney transplant. According to USA Today the surgery was done at Children’s Hospital of Philadelphia, where her family previously complained she had previously been denied being considered for a transplant because of her intellectual disability due to Wolf-Hirschorn syndrome. The surgery took place July 3, 2013. Continue reading

The Agony and the Ecstasy of Parenting a Child with Intensive Needs

ristina2 This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways. Continue reading

MECP2 Duplication Syndrome Families on Facebook

 

MECP2FTFBFamilies of children or adults with MECP2 Duplication Syndrome are invited to join one (or more) of the Facebook groups connecting families.  The MECP2 Duplication Syndrome Family Talk Group links more than 300 family members from around the world. Topics of discussion include: information sharing, mutual support, news on research and treatment, practical tips, and lots more.

The UK MECP2 Duplication Syndrome Support Group links 1904 family members, primarily in the United Kingdom and Europe.
Duplication MecP2 France links 72 Francophone family members in France and other countries.
To join these groups, family members must join Facebook (if they are not already members). Then go to the group page and request membership.

2nd MECP2 Duplication Syndrome Family Conference

2nd MECP2The 2nd MECP2 Duplication Syndrome Family Conference will be held in Houston, Texas, March 27-29, 2013.  To download a conference brochure, use this link: 2013 Houston MECP2 Conference Brochure   [Click on this link to download Conference Brochure]. The conference will be held at the Hilton Plaza Medical Center Hotel: Continue reading

Families Seek Funding for Research

26 March 2011 Families of children and adults with MECP2 duplication syndrome have been working hard to raise cash to fund research that may lead to effective treatment.  One part of their effort is collecting votes in a contest that will award $5,000 toward this research. With just 4 days to the polling deadline, they have a narrow lead, but competition is stiff. If you want to support their effort, follow this link and vote for Alli Holland’s dream.