Re: No dilemmas, but a sad call

April 3, 2006

What a horrible man and I say better off that he's gone. She has enough o

deal with and doesn't need two babies at home. Boy it is hard to be a single

mother and you compound that with having a child who has CHARGE gosh I don't

know how she'll do it. Then with the lack of medical advances, boy that's

tough.

Hopefully she will be able to see the brighter side of things. Her child

with each her how to be happy with the littlest of joys. And her love for all

her children will carry her forward.

For individuals who have CHARGE there is a 50/50 chance that their children

might have CHARGE. To what severity who knows. But her child is so young and

with all the medical and genetic advances that continually go on there is the

unknown of what the future will hold for anyone. Leave it at that and focus

on today.

Does she have access to the Internet? She can go to the Foundation webpage

and learn more there.

Love the chan clan bit!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

April 3, 2006

What a horrible man and I say better off that he's gone. She has enough o

deal with and doesn't need two babies at home. Boy it is hard to be a single

mother and you compound that with having a child who has CHARGE gosh I don't

know how she'll do it. Then with the lack of medical advances, boy that's

tough.

Hopefully she will be able to see the brighter side of things. Her child

with each her how to be happy with the littlest of joys. And her love for all

her children will carry her forward.

For individuals who have CHARGE there is a 50/50 chance that their children

might have CHARGE. To what severity who knows. But her child is so young and

with all the medical and genetic advances that continually go on there is the

unknown of what the future will hold for anyone. Leave it at that and focus

on today.

Does she have access to the Internet? She can go to the Foundation webpage

and learn more there.

Love the chan clan bit!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

April 3, 2006

What a horrible man and I say better off that he's gone. She has enough o

deal with and doesn't need two babies at home. Boy it is hard to be a single

mother and you compound that with having a child who has CHARGE gosh I don't

know how she'll do it. Then with the lack of medical advances, boy that's

tough.

Hopefully she will be able to see the brighter side of things. Her child

with each her how to be happy with the littlest of joys. And her love for all

her children will carry her forward.

For individuals who have CHARGE there is a 50/50 chance that their children

might have CHARGE. To what severity who knows. But her child is so young and

with all the medical and genetic advances that continually go on there is the

unknown of what the future will hold for anyone. Leave it at that and focus

on today.

Does she have access to the Internet? She can go to the Foundation webpage

and learn more there.

Love the chan clan bit!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

April 3, 2006

Les,

apart from the sad story of this woman and her bad husband, you crack me up. I

think the Dyson people owe you big time and perhaps should hire you for a TV ad.

Let us know what happens with the woman and her baby/family.

pam

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Perkins School for the Blind, Deafblind Program

175 North Beacon St.

Watertown, MA 02472

> ----------

> From: CHARGE on behalf of Lesley Chan

> Reply To: CHARGE

> Sent: Monday, April 3, 2006 3:31 PM

> To: CHARGE

> Subject: No dilemmas, but a sad call

>

> Hi all

>

> we had a call from a lady with an 8 months old charger, our

> genetecist asked me months back could she pass on our number to this

> family, which of course she could, we all know how awful the

> beginning is!!

>

> Apparently Darren spoke to her as i was at college, and she has four

> girls already, and now has a boy with charge, she did not seem clued

> up, and Darren tried his best and said I would ring her in a couple

> of days.

>

> Her main problem is her husband is in denial and has gone back home

> to pakistan, and left her with five children ( what a bad man he

> is!!), also she said where she lives they dont really have agreat

> deal of medical knowledge (also cultural differences)she seems to

> have very little support, and she knows very little on charge, she

> also kept on asking Daz if he knew whether or not if charge children

> can have their own kids! which we have not got a clue on....its far

> to far down the line of my worries!!!

>

> What should i say about this as i dont have a boy with charge but

> tonight read about the micro penis and stuff, and could not find

> much about having children ... i find i only read parts of charge

> affecting Amelie.( and thats enough to read up on in itself)

>

> I will ring her midweek and suggest the UK support group and also

> this listserv just not sure if she has access or time for internet.

> its just i dont feel adequate to be able to offer advice as my brain

> aches many a day with charge land its so complicated.

>

> well thats it for now from Mrs Dyson and the chan clanxxx

>

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>

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>

April 4, 2006

and get her aq manual lesly taht is the most important thing bonnie my mum

used to be on the foundation acutaly to busy for that and much other stuff

charge related thgouth ud wanna know that one:) well weve got a charge

family friends over here weve got lots but thers thsi fam we r very close

with live round the corner we been in hosp heaps together well we r the same

age oru mums r the same age or clsoe and so r our dads well her dad was in

denial well i wouldnt say absolute but he never really bothered to learn as

much sign as te rest did he never left though its horrible when people deny

about charge or any illness its stupid and i hate it

>

> What a horrible man and I say better off that he's gone. She has enough o

> deal with and doesn't need two babies at home. Boy it is hard to be a

> single

> mother and you compound that with having a child who has CHARGE gosh I

> don't

> know how she'll do it. Then with the lack of medical advances, boy that's

> tough.

> Hopefully she will be able to see the brighter side of things. Her child

> with each her how to be happy with the littlest of joys. And her love for

> all

> her children will carry her forward.

>

> For individuals who have CHARGE there is a 50/50 chance that their

> children

> might have CHARGE. To what severity who knows. But her child is so young

> and

> with all the medical and genetic advances that continually go on there is

> the

> unknown of what the future will hold for anyone. Leave it at that and

> focus

> on today.

>

> Does she have access to the Internet? She can go to the Foundation

> webpage

> and learn more there.

>

> Love the chan clan bit!

>

> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

>

> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

>

April 4, 2006