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Forum -> Children's Health

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amother

Bronze

Tue, Aug 15 2017, 1:28 am

Bonei Olam, had a gathering, for parents of children, with genetic disorders. I'm not sure if they still have them, maybe find out if you're interested.

siyata dishmaya

Tue, Aug 15 2017, 11:51 am

interesting, where and when?

amother

Fuchsia

Tue, Aug 15 2017, 3:49 pm

My daughter has a rear disorder and needs to be in special school. Don't know if it is a rare genetic disorder. I went for genetic testing and they didn't come up with anything. But that can mean they didn't find the gene yet or...whatever it is, I would be interested in a support group. And happy if I can find similar child...

amother

Copper

Wed, Aug 16 2017, 4:38 am

amother wrote:

Copper amother, I was following this and other threads here but didn't post before. My child has some developmental delays and a few years ago was given microarray testing that diagnosed a genetic disorder (microduplication). I've found a site for parents of children with microduplications on the same general area as my child's, but most of the children have more severe delays than my child does. Probably that's because my child's microduplication is smaller than some. Also, most parents don't get their children tested and seek out a support group unless they have more significant delays.

So I am lucky in that my child can be mainstreamed and just needs extra help, unlike some of the other parents whose children depend on feeding tubes and may struggle to learn everyday activities. That said, though, my child does need a lot of therapies in school and requires some extra medical support, and I could benefit from some advice and support in navigating this. I feel like I can't find that support on that site, because my child's situation is different. Our insurance company offers case managers for certain conditions, but when I called and asked for one I was told that I didn't qualify.

I suspect my child's disorder is de novo but at this point it isn't relevant. My child's father is no longer involved in our lives and he is not available for testing. I'm not having any more children, so there is no reason for me to be tested either.

I think the organization you are thinking of is called beineinu. I did seek them out around the time my child was diagnosed but could not find a match, and they do not appear to be active now.

Yes, I beleive Beineinu was the organization I was thinking of - their website is not up at the moment, which is probably why I couldn't find it.

I understand your points. If people feel it could help them, then it should be done.

amother

Copper

Wed, Aug 16 2017, 4:41 am

amother wrote:

To the mother who has a masters in human genetics:
Maybe you can help by being the medical knowledge behind this group?
I am ready to post my phone number if this is something you would discuss.

Do you have an e-mail I could contact you at? I want to think about it, and find out more about what it might entail, and I'd be happy to reach out to you by e-mail as a first step.

siyata dishmaya

Wed, Aug 16 2017, 1:40 pm

yes. Please PM me.

siyata dishmaya

Wed, Aug 16 2017, 1:42 pm

Beinenu is active!
You can call 347-743-4900

siyata dishmaya

Wed, Aug 16 2017, 1:43 pm

I see we are slowly gathering a group. So far, only one person PM ed me. If whoever is interested can please please PM me so we can get this off the ground and get everyone the help and support they need.

siyata dishmaya

Wed, Aug 16 2017, 1:47 pm

whoever is interested can email me at anonymous2aswell@gmail.com

siyata dishmaya

Wed, Aug 16 2017, 2:06 pm

To Fuchia:
Are you stopping there? Did you speak to anyone? Maybe this is something you need to get to the bottom of? Maybe not Smile

amother

Pearl

Wed, Aug 16 2017, 8:32 pm

siyata dishmaya wrote:

To Fuchia:
Are you stopping there? Did you speak to anyone? Maybe this is something you need to get to the bottom of? Maybe not Smile

And unless you know for sure that your child's mutation is de novo, some of your other kids may be carriers too... Something to think about.

amother

Peach

Wed, Aug 16 2017, 8:41 pm

By opening this support group/ organization phone line, people like Fuchsia would have whom to call to see what to do from here. Basic advice and understanding and experience...

amother

Pearl

Wed, Aug 16 2017, 8:55 pm

amother wrote:

By opening this support group/ organization phone line, people like Fuchsia would have whom to call to see what to do from here. Basic advice and understanding and experience...

Or they could just go to a genetic counselor

siyata dishmaya

Wed, Aug 16 2017, 9:06 pm

Unfortunately, many a time the genetic counselor does not guide to the furthest end of the possibilities. That was my experience... what do you think? Sometimes, you need to explore your own options...

amother

Floralwhite

Wed, Aug 16 2017, 9:26 pm

siyata dishmaya wrote:

Yes! With an unusual diagnosis the resources are woefully inadequate. I posted earlier that b"H my children do not have a disorder but in the course of IF treatments we discovered that we carry a rare disorder. (Actually, there's a chance that my kids may have it but are asymptomatic, which occurs in 50% of those with the disease.)

The genetic counselor was not very helpful and did not have a lot of information. Bonei Olam and Dor Yesharim had very limited info too (I think BO told us straight out that they know nothing about it.) My pediatrician got in touch with a specialist in a major children's hospital who said that he's never seen a case of it... and recommended that we see a genetic counselor LOL

Sometimes there's just no information to be had.

I remember reading an article, in the Ami or Mishpacha maybe, about orphan diseases, was there any valuable information in there?

(Just OOC, would this support group include people like me who are not dealing with affected children but are seeking support in treatment to avoid the disorder?)

amother

Pearl

Wed, Aug 16 2017, 9:29 pm

amother wrote:

I remember reading an article, in the Ami or Mishpacha maybe, about orphan diseases, was there any valuable information in there?

The article was a huge disappointment. It talked about one specific orphan disease and a couple's drive to find and fund treatment to save their childrens' lives. Could have been inspirational if the headlines on the cover weren't so misleading.

Amother, there are organizations out there that help people dealing with orphan genetic diseases

amother

Floralwhite

Wed, Aug 16 2017, 9:31 pm

amother wrote:

Too bad. I remember glancing through it but I don't think I had a chance to read it thoroughly before it got tossed. I find a lot of articles do that - skim the surface but don't get into the meat of the matter. I guess, based on what all of us are writing here, that there isn't too much info to write about...

MagentaYenta

Wed, Aug 16 2017, 9:34 pm

Perhaps NORD can help you folks. Don't reinvent the wheel unless you really must.
https://rarediseases.org/for-p.....tion/

amother

Pearl

Wed, Aug 16 2017, 9:35 pm

amother wrote:

Oh I don't agree. There's a ton of info out there to write about, but you won't find it in the mishpacha. Most of their readership would not be interested unless it affected them in a personal way. Unfortunately.

amother

Peach

Wed, Aug 16 2017, 9:39 pm

Hello and thank you to all of those who are reaching out by emailing anonymous2aswell@gmail.com
Happy to see people are recognizing the need...
I am not sure how we will be setting this up. I don't think "genetic" will necessarily be the criteria needs to be met.
From what I understand, and from the feedback I am getting, there is a need for an organization for "rare" disorders.
The support would include a helpline to call for chizuk and medical advice, a "welcome packet" for beginners with hope, a support group categorized into sections of people who can relate as well as referrals to the right people, doctors, or organizations for help. (and if I dream big, a shiduch networking center too!)
Firstly, we need funding and will begin working on that shortly.
Is what you child has common or rare?
I would love to be in touch with you either way...

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