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thefishery Message
26 Jul 2009, 04:29 AM

I am the mother to an amazing 4 year old little boy who has been diagnosed with 5q deletion. We are awaiting more testing to find the deletion. This will be done in September. I am looking forward to more meeting more parents with children of the same deletion.
mrstindle Message
4 Jan 2010, 01:47 AM

Hi there, My son has Distal 5q deletion syndrome his deletions are q34q35.3 I am desperate to find someone to share and talk to, as we live in New Zealand there is nothing much here to access. I have been told that my son is one of only 13 in the world. So i am searching world wide to see what our future holds!!
Binnie20 Message
15 Jun 2010, 02:37 AM

Hi, My son has 5q band 14.3 deletion syndrome. I would love to talk to anyone out there that has the same as him. He has just turned two.
Sean Message
3 Mar 2012, 03:27 AM

Hi my son Sean has 5q 12,3 deletion,he is 5 year old now,he has speech delays and seizures disorden, and other health issues,i hope a can fine other parents to talk about it.
Caitsmom Message
3 Mar 2012, 01:48 PM

Hi. My daughter Caitlyn will be 3 in July and has 5q deletion. Q21.1-q23.1. She has developmental delays, including speech and motor skills. She has low muscle tone but PT has been helping w that. She was recently diagnosed w Celiac disease but they are not certain that is connected w her 5q disorder or not? It does not run in either of our families. Would also love to talk w others going through what we are! Drs tell us they just don't know what her future holds as there is not much hard to hear that!
mrstindle Message
4 Mar 2012, 08:33 AM

It is so hard not knowing whats in store with our babies! my son Jakob is almost 4 years, severely delayed around 6-9months his mental development is and this hasn't changed for quite some time, not talking, walking, communicating.Has alot of medical issues such as heart, kidneys, piece of skull missing, low muscle tone, etc he gets feed through mic key button. Some days I find it soooo tough, but its the way of life for me, I love my little boy always so smiley and happy :) if anyone wants to contact me i am on Facebook MELISSA BRODIE, send me a request and a message just so I know that your from rare share. Jakob's deletions are 5q break points 5q34 5q35.3,
Sean Message
5 Mar 2012, 07:21 AM

Hi Caitsmon,I live to in Ny too, my phone 716-434-1046 if you need to talk,feel free to call me...