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Hi Nette,
My name is Cesar and I'm Isabella's father. My wife and I would love to continue corresponding with you because, as you said, there's only a few of us out there. Also, Joshua and Bella have virtually the same age and given the 11q duplication they may have similar traits and experience similar challenges.
We're originally from Brazil, but we've been living in the Boston area for many years. We don't know anyone in this area with an 11q duplication issue and the doctors generally don't provide a lot of information about it either because, perhaps, they don't know enough about it themselves.
It appears to me that one trait common among those who have 11q duplication is that they tend to be happy, at least as children. Bella is a very, very happy little girl. She's very loving and enjoys cuddling with her parents and with those she loves (adults).
You mentioned that Josh doesn't walk yet. Have you had his hips, legs, and feet checked yet? Because of Bella's overall low muscle tone, she took a long time to crawl, to stand, and also to walk. The low muscle tone contributed to the bones of her feet collapsing. That caused her feet to roll inwards and that made it more difficult for her to stand and to walk more comfortably. Her balance is still a little shaky, but overall, her posture and walking improved significantly after her feet were surgically realigned and her heel cords extended.
As you know, Bella's ability to talk is still very limited right now, being able to say a few words and make a few approximations. However, her ability to understand spoken language has progressed more steadily, both in English and Portuguese. She follows simple directions at home and at school with good consistency.
Ear infections seem to be
another common trait. Bella's had quite a few ear infections, even though she had tubes inserted in her ears about two ears ago. Because of the tendency for fluid to build up behind her ear drums, her hearing has been affected and she now has a moderate hearing loss due to the fluid, which will tend to dissipate once the fluid is gone. Consequently, she'll have the tubes inserted again, probably in a couple months or so.
On a different note, there will be an 11q conference in San Diego in July. Do you know anything about it? If so, do you plan to attend?
We look forward to hearing from you again!
Cesar and Alessandra
Nette M <halfcompletepkg@...> wrote:
Alessandra, I have just now seen your post to the 11q network. My son Joshua is Partial Trisomy 11q duplication between his 11 and 14 chromosomes. He is non verbal, does not walk. He is going to be 8 years old in April and we think mentally he is about 3. He shakes his head yes and no to answer questions, he is mainly a very very happy boy with a zest for computers, Elmo, and his sister. I was wondering were you are from. We are from Michigan. If you would like to talk to me about your situation - I would love to talk to you. You can contact me here on line and I will respond back. Since there are VERY few of us 11q duplications out here I love to talk to anyone that may be in some of the same situations as Josh. Take care and I look forward to chatting!!!
Alessandra Pungirum <apungirum@yahoo.com> wrote:Hi,JeremyThanks for awnser. Your daugther has a beatiful name, means a lot. Bella was born with VSD, she is fine now, no heart diseases any more, she is walking, no jump and run.She had bone implant at the feet last year, she had flat feet, 3 months with long cast but the doctor did a great job, she is walking now with a small special AFO inside her shoes, she had long braces and AFO before. She can say about 20 words, she can point , when she wants some thing ,she point and say "mine", some thing almost Please, food she call "ba ba", she can sign yes and no.
She goes to first grade and loves go out. She is very special, we love her too much, she is my best friend.Any question i will be glad to help. Alessandra.
Jeremy Pyle <dad_11q@yahoo.com> wrote:Alessandra,Welcome to our group. Faith has an 11q23.3 deletion and is 3 1/2 years old. She has Hypoplastic Left Heart Syndrome and has gone thru 2 of the 3 surgeries to fix this condition. She is walking holding one hand and also does not speak. She trys to communicate non verbal and with alot of pointing. She is not yet potty trained. Since she is non verbal and not walking we have not felt that we should try at this time. She does not get constipated but has problems passing stools.I am not sure how the others feel but there seems to be alot of similarities with all our children but there seems to be no 2 cases the same. These children truely are special as all children are!Take care,JeremyFaith (3 1/2 yrs.)----- Original Message ----
From: apungirum <apungirum@yahoo.com>
To: 11q_disorders@yahoogroups. com
Sent: Saturday, February 9, 2008 9:50:11 AM
Subject: [11q_disorders] Chromosome 11q duplicatinos(trisomy)
My name is Alessandra, we have a 7 year old daugther(Isabella, a
happy and beatifull girl). And have never been in contact with anyone
else who is connected with the disorder.I want any information about
other kids with that disoder. She is very happy, not talk and potty
training yet. Thank you and God Bless you all...
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