Re: Update from Stirling's Mum:)

[Guest guest]

Hi .

My name is Jeanie and my son, Brockton, was diagnosed with RSS on Nov. 11 this

year. He is 15 mo. old. He is going for blood work on the 15th of Dec.

Thank you so much for taking the time to email this information. I will ask

the Dr. about it when we go.

Brockton had his 15 mo. checkup Tues. and his pediatrician said that after we

get the results from the bloodwork, she will be willing and glad to contact Dr.

Harbison for me and will work with her on Brockton's behalf. His pediatrician is

a young woman, in her 30's. She is wonderful. I credit her for the fact that

Brockton is even here at all! She never discouraged me during my pregnancy,

which was extremely difficult, and always stood by every decision I made to

protect my unborn son. I just hope that she continues to do so!

Once again. Thank you! This site is my only source of information!

Jeanie (, 18, non RSS and Brockton, 15 mo., RSS)

sickybear wrote:

We have had a letter from our geneticist following our meeting with

him in November. It is basically confirming the diagnosis and the

findings they have from the tests so far.

This may be of interest to you, They are going to see if they can do a

new test on his samples. Apparently there is a new discovery that 1/2

of RSS cases are caused by a fault on Chromosome 11 in a gene called

ICR1. I'll keep you posted if they are able to test Stirling's

samples and what the outcome is.

They cannot find an obvious connection between his RSS and the PPH

that caused his death, but they are still looking!

We see him again when the data is in and any further tests concluded.

Wishing you all a Happy Christmas and Prosperous New Year!

T

(Sharleen 4 non-rss, Stirling RSS 13 Oct 2004 - 6 June 2005)

[Guest guest]

I meant to add that my prayers and thoughts will be with you through this

holiday season. I cannot begin to imagine the strength you have. I am truly

sorry for your loss. God bless and keep you!

Jeanie

sickybear wrote:

We have had a letter from our geneticist following our meeting with

him in November. It is basically confirming the diagnosis and the

findings they have from the tests so far.

This may be of interest to you, They are going to see if they can do a

new test on his samples. Apparently there is a new discovery that 1/2

of RSS cases are caused by a fault on Chromosome 11 in a gene called

ICR1. I'll keep you posted if they are able to test Stirling's

samples and what the outcome is.

They cannot find an obvious connection between his RSS and the PPH

that caused his death, but they are still looking!

We see him again when the data is in and any further tests concluded.

Wishing you all a Happy Christmas and Prosperous New Year!

T

(Sharleen 4 non-rss, Stirling RSS 13 Oct 2004 - 6 June 2005)

[Guest guest]

- thank you for that information. I'm sure it's somewhat

comforting to know that the geneticist is truly looking for

answers. Let us know your findings when you get a moment. Our

prayers and thoughts are with you this holiday season.

By the way, how is Sharleen doing these days? Is she looking

forward to the holidays? Please take care - hugs to all of you.

- H ()

>

> We have had a letter from our geneticist following our meeting

with

> him in November. It is basically confirming the diagnosis and the

> findings they have from the tests so far.

>

> This may be of interest to you, They are going to see if they can

do a

> new test on his samples. Apparently there is a new discovery that

1/2

> of RSS cases are caused by a fault on Chromosome 11 in a gene

called

> ICR1. I'll keep you posted if they are able to test Stirling's

> samples and what the outcome is.

>

> They cannot find an obvious connection between his RSS and the PPH

> that caused his death, but they are still looking!

>

> We see him again when the data is in and any further tests

concluded.

>

> Wishing you all a Happy Christmas and Prosperous New Year!

>

> T

> (Sharleen 4 non-rss, Stirling RSS 13 Oct 2004 - 6 June 2005)

>

[Guest guest]

Hi ,

Thanks for the reply. When we next see Dr Woods i'll update you all -

hopefully they will be able to use the remainder of Stirling's

samples on some new research.

Sharleen is fine, she often mentions him. On Bonfire night in

November (5th Nov) she was most concerned he was going to be knocked

off his cloud by the fireworks and be frightened by the noise and

bangs. We explained there are lots of big people there to look

after the small people so he would be fine:) Christmas is going to

be strange for us as we miss him so much, but she is looking forward

to it. She wants some Polly Pocket stuff, so we have got her the

Snow Hotel. She was 4 in Nov so is now really understanding what it

is about. She is going to decorate our tree later today (11 Dec)

Have a good Christmas, I'll be watching the board as always!

T

> >

> > We have had a letter from our geneticist following our meeting

> with

> > him in November. It is basically confirming the diagnosis and

the

> > findings they have from the tests so far.

> >

> > This may be of interest to you, They are going to see if they

can

> do a

> > new test on his samples. Apparently there is a new discovery

that

> 1/2

> > of RSS cases are caused by a fault on Chromosome 11 in a gene

> called

> > ICR1. I'll keep you posted if they are able to test Stirling's

> > samples and what the outcome is.

> >

> > They cannot find an obvious connection between his RSS and the

PPH

> > that caused his death, but they are still looking!

> >

> > We see him again when the data is in and any further tests

> concluded.

> >

> > Wishing you all a Happy Christmas and Prosperous New Year!

> >

> > T

> > (Sharleen 4 non-rss, Stirling RSS 13 Oct 2004 - 6 June 2005)

> >

>

[Guest guest]

,

Jolly hockeysticks! (ok, one of my London clients used that one on

me the other day and I have been anxious to try it out).

I think Sharleen's attitude is so wonderful - begin concerned about

him being knocked off his cloud and all. I am still so sorry about

Stirling. I remember his pictures well, such a smiley one.

Take care!

> > >

> > > We have had a letter from our geneticist following our meeting

> > with

> > > him in November. It is basically confirming the diagnosis and

> the

> > > findings they have from the tests so far.

> > >

> > > This may be of interest to you, They are going to see if they

> can

> > do a

> > > new test on his samples. Apparently there is a new discovery

> that

> > 1/2

> > > of RSS cases are caused by a fault on Chromosome 11 in a gene

> > called

> > > ICR1. I'll keep you posted if they are able to test

Stirling's

> > > samples and what the outcome is.

> > >

> > > They cannot find an obvious connection between his RSS and the

> PPH

> > > that caused his death, but they are still looking!

> > >

> > > We see him again when the data is in and any further tests

> > concluded.

> > >

> > > Wishing you all a Happy Christmas and Prosperous New Year!

> > >

> > > T

> > > (Sharleen 4 non-rss, Stirling RSS 13 Oct 2004 - 6 June 2005)

> > >

> >

>