Re: Re: SMA Conference...Another view/What type?

[Guest guest]

I was wondering at what age were you all diagnosed and with what type? I was

dx'd with type 1 at 9 months old. When I wasn't dead by age 2, I was

rediagnosed as type 2.

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

In a message dated 11/12/2004 11:45:35 PM Eastern Standard Time,

blueyedaze@... writes:

I was wondering at what age were you all diagnosed and with what type? I

was

dx'd with type 1 at 9 months old. When I wasn't dead by age 2, I was

rediagnosed as type 2.

Dx'd at 8 months w/ type 1, rediagnosed at 18 w/ type 2. Bach at UMDNJ

thought I was a type 2 bc I could sit unsupported for a little while as a

toddler, but WHATEVER! I'm way weaker and unstable than any other type 2's

I've

known or have talked to. So I don't know, but one dr said I'm like a SMA Type

2a, which is like the severest type 2, so he says.

Sincerely,

s, the Unique Princess.

[Guest guest]

I don't want to start anything but I would say 99% of it was by FSMA

Staff...I won't name anyone but it went very high up in the chain of command.

MJ

" I'll remember you, though. I remember everyone who leaves. " ~ Lilo & Stitch

MJ was the being shunned for having type 1, by the fsma staff/org or by

other conference participants?

[Guest guest]

MJ was the being shunned for having type 1, by the fsma staff/org or by

other conference participants?

On 11/13/04 1:07 PM, " " <TWEETYROLL88@...> wrote:

>

> At 6 months of age, I was diagnosed as type I. By 5yrs of age my

> pulmo. rediagnosed me as type II. I was then rerediagnosed as a type

> I+ by several different doctors, based on motor milestones reached.

>

> MJ

> " Reach for the moon. The worst that can happen - you'll fall among

> the stars. "

> - Unknown

>

>

>

>> > I was wondering at what age were you all diagnosed and with what

> type? I was

>> > dx'd with type 1 at 9 months old. When I wasn't dead by age 2, I

> was

>> > rediagnosed as type 2.

>> >

>> > Amy

>> > Wife to Will 11/3/95

>> > Mother to Olivia Isabelle 9/18/03

>> > http://www.babiesonline.com/babies/o/oliviathegreat/

>> >

>> >

>> >

>> >