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Name: alfies mum

[ Original Post ]

hi guys. i'am a mum of 2 boys from england, the youngest Alfie has been diagnosed with MECP2 duplication syndrome a very rare genetic condition. just wondered if anyone on here has any experience of this as i believe there a only a few diagnosed cases in england but more in the united states and as usual you guys are way ahead of the game in terms of research, thanks in advance Rachel x ↓

Name: annie o,neill | Date: Nov 12th, 2011 12:25 AM

hi i have a granson who is 3 and he has mecp2 dupliation wher abouts in england do you live and are you on face book . ↑

Name: Rhona Connelly | Date: Nov 17th, 2011 11:41 AM

Hi Rachel, we have a lovely lad Connor who is 9 years old and has been diagnosed with MECP2. We live in Scotland but are meeting in Manchester on the 28th January with other MECP2 families. We would love you to come. Please email me for further deatails: [email protected]. Look forward to hearing from you soon, Rhona x ↑

Name: Dick Sobsey | Date: Feb 13th, 2012 5:27 AM

Hi Alfie's Mom, I am the dad of a 21 year old with MECP2 Duplication Syndrome in Canada. If you are not in touch with other UK families, facebook has a group for UK families that recently started called the UK MECP2 Duplication Syndrome Support Group http://www.facebook.com/groups/319013378142233/ ↑