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looking to connect with other parents of kids with a 5p duplication

cezuriel Message
28 Aug 2014, 04:00 AM

My 4 year old daughter was born with a duplication of chromosome 5p, club feet and Hydrocephalus. She is nonverbal, doesn't walk and is physically and mentally impaired. It's been a tough few years, but she's come an incredible long way and surprises us constantly with new achievements and changes in behavior. As you all can relate, the fact of not knowing what to expect, especially as it's such a rare chromosomal abnormality, is nerve wracking. I am scared and nervous of what the future might hold. I am looking for parents of kids with the same chromosomal abnormality, that would like to share with me their child's story, experiences, fears, worries, achievements, reached milestones and hopes. Simply knowing that there are other families out there that can relate and understand would mean a lot to me.
dawnpearce Message
21 Oct 2014, 07:15 AM

Hi :) i have just set up a facebook page 5p duplication if you would like to join? Happy to send you my email address if thats easier. Ciara has 5p15.33 duplication she is 13 years old. She walked late at age 2/3 years and speach was delayed u til around 3 too. She is not doing ok. Young for her age, but gets away with it as she us very petite. Would love to link up. Dawn
cezuriel Message
21 Oct 2014, 03:25 PM

Hi Dawn! Thank you so much for reaching out to me. I would love to join your FB page and get in touch with you. Sorry to hear Ciara isn't doing so well. Maybe we can get in touch and talk some more. My email: alpha.ramona@gmail.com Thanks and have a great week! Ramona
tshields Message
3 Dec 2014, 10:45 PM

Hi there. Our 11 year old son has just been diagnosed with a relatively large 5p15.33 duplication. He's a cool kid, but has severe autism and is non-verbal. His receptive language -- his ability to understand what's going on around him -- is good. He definitely suffers from behavioural issues that have increased as he has gotten older and isn't able to express himself well. Re the 5p thing, we are waiting for an appointment with a genetecist who we hope will be able to give us more info on any health issues or testing that might need to be done. Our son is a pretty healthy kid, with the exception of allergies, but would love to get baseline screening on the health issues that (I think) people are more succeptible too with 5p. Has anyone been through this process? Thanks so much!
LisaJ Message
7 May 2015, 09:41 PM

Hi! My son has just been diagnosed with 5p15.33 and 2q14.2 duplications. He has just turned 2. We are waiting to see genetics now. He has no speak but lots of babble, trying to teach him Makaton but no success so far. He started walking at 23 months but has an abnormal gait and falls over frequently. He also has a squint. He is my 3rd child and we are in the UK. Can I join the FB page please? Lisanewbery@btinternet.com. I would really love to hear how your getting on and what support your children had at school.
dawnpearce Message
8 May 2015, 07:24 AM

Hi :) am sooo sorry its taken so long to reply. Been hecktic recently :( please feel free to add to my 5p duplication facebook page. You guys are the only ones ive found so far with this duplication. I would love to make contact. Dawn :)
phagant Message
8 May 2015, 10:25 AM

There is a group Facebook page that I belong to that you would be welcome to join. There are a number of other families with a 5P duplication diagnosis. We also have some information pamphlets that were put together by a research organization with much of the information coming from interviews with families in this Facebook group. I think you would find it very helpful. Search Facebook for "Trisomy 5P" and you'll find our group. Please join us!
Jessica02 Message
14 Aug 2015, 01:17 PM

Hello!!! So happy to find other families. My son is now almost 6 and was diagnosed with 5p duplication at 10 months. He also started walking at 2.5 with the help of therapy. His speech is extremely delayed and difficult to understand but very excited that he is putting sentences together now! This last year he has grown leaps and bounds. I will be sure to look on fb for the page.
phagant Message
15 Aug 2015, 04:12 PM

Hi all - just checked and we have 84 members on our 5P Trisomy FB page. Lots of variation in what sort of duplications these kids have on 5P, but I recall several years ago when I thought my daughter was the only one with such a diagnosis... now look at how we've all managed to connect! Jessica - so glad to hear about your son's progress! Speech is definitely a common issue our 5P+ kids seem to share. My daughter's speech was so difficult to understand that I enrolled her in a Montessori school for the deaf and we use ASL to supplement her speech. Hope to see you all on the Trisomy 5P FB page soon!
colecacola Message
8 Apr 2016, 07:23 PM

Hi All, I'll request to join the facebook page also. My son is 5p13.33 duplication in mosaic form. Look forward to connecting. Thanks, Debbie
phagant Message
11 Apr 2016, 01:51 AM

I just realized the Trisomy 5P Facebook page is a closed group. If you will email me at phagant@erau.edu with YOUR email, I will add you to the Facebook group. Tiffany