Beckwith Wiedemann

simba

Wed, Aug 09 2017, 2:19 pm

Yes, my friends has a little girl with this. She will be turning 3 soon. She is very cute!
I guess she is not on ima!
Would you like me to ask her if she wants to connect with you?

siyata dishmaya

Wed, Aug 09 2017, 7:01 pm

If anyone else knows of someone with hemihypertrophy or beckwith Weidmann or any other growth disorder, please let me know.

siyata dishmaya

Thu, Aug 10 2017, 10:41 pm

I know I keep on asking, but im hoping someone will come up with someone who knows someone that has this syndrome or any overgrowth/ genetic disorder. thank you.

amother

Gold

Thu, Aug 10 2017, 10:56 pm

I worked with a child with Beckwith Wiedmann at one point, but it would not be feasible to have the family contact you. Have you been in touch with chai lifeline? They might have some connections.

siyata dishmaya

Thu, Aug 10 2017, 11:21 pm

I would love to hear about your experience working with the child... As far as Chai Lifeline, they are trying to find someone. Like I mentioned, its rare and the family may not have contacted Chai Lifeline at all to begin with.

yogabird

Thu, Aug 10 2017, 11:33 pm

OP are you on Facebook? There is probably a group for parents of children with Beckwith Weidmann and/or hemihypertrophy and you can connect to many people in the same boat that way.

Unless you're looking for someone frum? Which I can totally understand...

siyata dishmaya

Thu, Aug 10 2017, 11:35 pm

Not on facebook. I am actually ok with someone not frum as long as they are accepting and positive about their child. Of course, if I could handpick, I would like someone frum that can relate to my lifestyle. At this point, any info or leads would be helpful and greatly appreciated.

amother

Gold

Thu, Aug 10 2017, 11:49 pm

siyata dishmaya wrote:

I'm not sure that I have anything valuable to share with you. She has hemihypertrophy as well as other features of BWS such as macroglossia, above average height/ weight, etc. She's a very lovable child and everyone seems to have a soft spot for her Smile

She was 3-4 years old when I was working with her, and she was screened very frequently for tumors. She had developmental delays, but that could very well have been unrelated to her diagnosis. The hemihypertrophy did not seem to affect her everyday functioning in any significant way.

siyata dishmaya

Thu, Aug 10 2017, 11:55 pm

Wow! Thank you! I am grasping on to any info I can get and that was amazing! few questions:
what do you mean by developmental delays? did she look funny in any way? do you know if she developed a tumor? do you know if this ran in her family or if it was hereditary?

amother

Gold

Fri, Aug 11 2017, 12:04 am

siyata dishmaya wrote:

I mean she was getting ot/pt/speech therapy. But plenty of kids without disorders get therapy at that age, so I don't know how much her diagnosis contributed. Speech was probably the biggest issue because of the macroglossia.

I wouldn't say she looked funny; most people probably didn't notice the hemihypertrophy at first (or second) glance. She was just a little girl in cute little girl clothing with a great personality.

In the time that I knew her, up to age 4 I think, she had not developed any tumors. I'm pretty sure there was no known cause for BWS in her case.

yogabird

Fri, Aug 11 2017, 12:10 am

Might be worth it for you to join Facebook just for this purpose. Having a child with a rare disorder is a lonely place to be, and the support received from other moms in the trenches can be a lifeline. All the moms I've ever met on Facebook support groups are awesome and incredible and devoted to doing all they can for their children.

siyata dishmaya

Fri, Aug 11 2017, 12:11 am

thank you for your information! anything more you have to share would be appreciated. If anyone else knows someone with BWS, please let me know. thanks again!

siyata dishmaya

Fri, Aug 11 2017, 12:12 am

I know. I may as a last resort. Like I mentioned, a frum person who can relate to my life style would be best. when you google these things, you never know who or what you are getting.

yogabird

Fri, Aug 11 2017, 12:16 am

It can be very hard to network about rare things when limiting yourself further by frum. And even if you do find one person, it'll just be 1 other perspective. The feeling of being in the virtual company of a bunch of moms who know exactly what you are going through emotionally, physically, medically etc is unparalleled. Just my 2 cents.