Re: Update from Stirling's family

[Guest guest]

,

Thank you for the update. I don't think there is anyone here who

would not appreciate hearing from you from time to time. and

Joe are still with us - and you can be, too.

Jodi Z

[Guest guest]

,

Thank you for the update. Don't ever hesitate to drop by and post an

update on how you all are doing. Let us know how the UPD7 study

comes out.

Take care,

Jodi R.

, 3, RSS, 23 lbs. 14 oz. 32 1/2 " , J tube.

> Hi, hope you don't mind me posting another little update.

>

> We have seen our local Paediatrician again, and he has confirmed

from

> the coroner's report that Stirling died from 'Primary Pulmonary

> Hypertension' This is apparently very rare- it only affects about 1-

2

> per million of population per year:(

> It is a cause given when there is no other reason for the pumonary

> hypertension- thickening of the artery in the lungs.

> This caused an enlargement of the right ventricle which ultimately

> caused the heart failure.

>

> The prognosis had it been discovered was poor- the only cure a

> heart/lung transplant. It is a condition that couldn't have been

> diagnosed in Stirling because he didn't give off any signals that

> there was a problem- i.e no murmurs etc.

>

> Basically he was doubly unlucky, what with the RSS as well. There

> doesn't appear to be a link between the 2 conditions, unless anyone

on

> here can find any evidence or has heard of it before.

>

> We are still awaiting the UPD7 results from the test taken the day

he

> died- should get those soon

>

> We miss him terribly- he was such a happy child, and we have our

good

> and bad days at the moment.

>

> T

> Stirling's mum

[Guest guest]

As well as ours also.

Tonya

Briggs wrote:

,

You and your family continue to be in my prayers.

B

sickybear wrote:

Hi, hope you don't mind me posting another little update.

We have seen our local Paediatrician again, and he has confirmed from

the coroner's report that Stirling died from 'Primary Pulmonary

Hypertension' This is apparently very rare- it only affects about 1-2

per million of population per year:(

It is a cause given when there is no other reason for the pumonary

hypertension- thickening of the artery in the lungs.

This caused an enlargement of the right ventricle which ultimately

caused the heart failure.

The prognosis had it been discovered was poor- the only cure a

heart/lung transplant. It is a condition that couldn't have been

diagnosed in Stirling because he didn't give off any signals that

there was a problem- i.e no murmurs etc.

Basically he was doubly unlucky, what with the RSS as well. There

doesn't appear to be a link between the 2 conditions, unless anyone on

here can find any evidence or has heard of it before.

We are still awaiting the UPD7 results from the test taken the day he

died- should get those soon

We miss him terribly- he was such a happy child, and we have our good

and bad days at the moment.

T

Stirling's mum

[Guest guest]

,

As of right now it looks like Maddy is doing well cardiac wise which is a

big break finally an area we won't have to follow up on. They said every thing

looked great so lets hope it stays that way .

Chrissy

[Guest guest]

Hi Chrissy, just browsing on here again, saw your reply to my message

last week.

Sorry if the details of Stirling's condition caused you concern, as so

little is known about RSS, it was a long shot to see if anyone had

experience of the condition or knew a dr who had found a possible link

or not. It now looks more likely to be unrelated.

Glad to hear that Madison is doing fine and it sounds like one less

appointment for you.

cheers and thanks for you support

T

(Sharleen 3 1/2 non-RSS, Stirling RSS)

> ,

> As of right now it looks like Maddy is doing well cardiac wise which

is a

> big break finally an area we won't have to follow up on. They said

every thing

> looked great so lets hope it stays that way .

> Chrissy

>

>

>

[Guest guest]

Thank God. I am really happy to hear that. I never thought I would know so

many " ologists. "

B

5 1/2 and Kelli 3

chrissynlou@... wrote:

,

As of right now it looks like Maddy is doing well cardiac wise which is a

big break finally an area we won't have to follow up on. They said every thing

looked great so lets hope it stays that way .

Chrissy