RE Falconer update, Ursula

[Guest guest]

Hi Ursula,

My sister has a son with CF and initial developmental delays but he is now 4yo

and shows no signs whatsoever of FG Syndrome.

I have many of the signs which I would never have thought were a part of a

syndrome until they were pointed out to me collectively in relation to s'

FGS.

I am waiting to hear from Dr Optiz whether he knows of any specialists here in

my part of Australia that are familiar with FGS, other than s'

geneticist. I'll keep you informed on whatever I find out in relation to FGS

and immune deficiency. All I have been told so far is that its not so

uncommon for FGS patients to also have immune deficiency or auto immune

conditions, but I dont know specifics at this stage.

How are Macey and faring?

Merry Christmas to you- and all the pumpkins and their parents,

mum to and , both w/ PIDs