Re: Re: explaining CHARGE to others

[Guest guest]

Janay--

At 7 Eddie is the same way. With people I care about, I remind them to

get closer and to touch him first, to alert him to your presence. For

others, I just say it's too loud/too far away & he probably can't hear

you.

It's too easy to underestimate our kids, but what they are able to

accomplish (in their own time) despite all their challenges is truly

incredible!

> ... People talk to Rasha and she doesn't even act like they're

> there. If I go into too much detail I get the pity looks and I feel

> like I've cheated her. As if they don't expect anything from her now

> when I think she's pretty incredible.

>

> Janay

> Mom to Rasha (21 months)

[Guest guest]

cris weahter they no it or not u r teaching them something new

>

> I dont really tell people who are not in the medical field Eva has

> colubomas I just tell them she has a vision loss, and then I add the

> hearing loss, heart issues (I also tell them she has had 2 heart

> surgeries one being open heart), one kidney, facial paralysis, feeding

> issues, and I tell them how she is behind on her milestones. I dont go

> to much into detail and most of the time that leaves them

> speechless....LOL! I enjoy telling people about CHARGE it makes me

> feel like I am teaching them something new.

> Hugs and good luck hun,

> Crystal, mom to (11), (4), and Eva (2 year old CHARGEr)

> wife to Dan in Illinois

>

>

> >

> > HELP!I am sure that you all have the common question " What is CHARGE

> > syndrome, I have never heard of it? " If I start to explain C for

> > coloboma etc then they question Coloboma atresia etc. I would like

> to

> > know how you all answer the question? I would like to give enough

> > detail rather than a genetic syndrome. Something that I can use

> with

> > everyone would be great.

> >

> > Thanks,

> > , mom to (11), Dylan(4), (20 months CHARGE)and Drew

> (2

> > months).

> >

>

>

>

--

stand up and speak up!!!!!!! and dont let the world hold you back just go

for it