Aussie Families

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Comment by Bec Paton on March 29, 2009 at 6:44am

I just saw this post from several weeks ago.



Ballarat is in the west of Victoria and a long way from most of the fires. Maybe you were thinking of Wodonga? The closest was the Daylesford fire (still 40 min drive away) but that was about a week after Black Saturday. The 40+ temps were revolting though. I hope next Summer is a bit less savage. Thanks for your concern - sorry we didn't check in earlier.
Cheers,
Bec

Comment by Steve WADE on February 26, 2009 at 5:51pm

Hi,

We are in NSW and after 2 1/2 years it looks like desire to determine our daughters Torahs problems is near. Im sure you all are aware after many ongoing tests having we might have a diagnoses for my youngst daughter as PKS. One tried at the end of last year I believe (correct me if im wrong) is usually only done in America by taking a swab of skin cells in her mouth to examine her skin DNA for this syndrome unfrotunately the test was inclusive/didnt work.

Even now is not 100% confirmed, but after Torahs Geneticist doctor attended Conference held here recently with Geneticist from all over the world she presented her case. Our fantactic geneticist confirmed her suspicious that Torah is beleived to have PKS. Im amazed how rare it is and after reading the limited information about PKS it describes Torah's condition and we believe they finally may have it. Torah apparently has to have another MRI and now a skin biopsy to confirm it, but my wife and I feel this is it.

As you may agree it makes my wife and I feel so much better being able understand and know torah's diagnoses so we can help her and focus on the future.

Maybe it is my inexperiene on the subject but is there a need to promote awareness of PKS in partiuclar to doctors within Australia to assist other people/children undiagnosed with PKS. In addition a specialised doctors and less evasive testing in Australia then a skin biopsy.

Since Torah was about one years old she was referred a Sensory gym which she attends one to two times a week. The sensory gym sessions have made major improvements in Torahs development, so if you are not attending it I highly recommend it. Torah does regular daily sound therapy like in her photo and has exercises to do. She also attends physiotherapy, chiropractic, laser acupuncture all have help dramically. We have been trying to communicate with sign language and Therapists want to introduce communication using a computer program. However it all comes at a cost.
How are we doing and any other ideas.

Comment by Nic, Terzita, Adam & Alessia Acquarola on February 10, 2009 at 3:30am

Edit:
this disaster far exceeds those of "Ash Wednesday" (1983) and "Black Friday" (?1934). You may want to google it to see the enormity of the disaster.

N

Comment by Nic, Terzita, Adam & Alessia Acquarola on February 10, 2009 at 3:26am

To update you all.... The enormity of this disaster in Victoria is simply incomprehnsible! We are fortunate that we are on the west coast but there is not one person here in Perth that is not feeling the pain that those people in Victoria are going through. People here are in a daze when the subject is brought up. The amount of money that is being donated, the services offered (even my hospital is on standby and has earmarked several specialists to go over there at the drop of a hat). The death toll is rising every hour. There is a story in everyone that you talk to that has a family or friend or knows someone that has been affected. From my understanding the Patons are ok (but have not heard from them yet) They are situated in Ballarat which is in the notheastern part of Victoria near the NSW border. Fortunately the fires have not reached that far. Dean's family live in Queensland and I assume are ok from the flooding as the floods are in the northern part of Queensland (very tropical and monsoonal at the northern end. There has been a huge drop in temperatures over Victoria the past two days with patchy rainfall but not enough to douse the inferno. But a relief from the scortching temperatures (in the 40's!!!).
We, like all the PKS families around the world, are praying that not only are the Patons ok but also to the rapid recovery and rebuilding of this scortched area in Victoria.

Better leave it there for now.
Nic and Terzita.

Comment by Luis, Speshelle, Kennedy and Zoe on February 9, 2009 at 5:29pm

I just want to say all of you Wonderul Aussies ( those who are experiencing the fires and those who have had soooo much rain) you are in all of our prayers.

Comment by Christine (Airyn) on February 9, 2009 at 11:24am

I had been thinking of the Aussie families as well all weekend. Hope our PKS families are ok.

Comment by Nic, Terzita, Adam & Alessia Acquarola on February 8, 2009 at 7:56am

Hi Patons,
I know that this is not PKS related but how is it all going with the huge fires in Vic? Each hour on the news here in Perth we get updated and the death toll rises each time. At last count it was 84 confirmed (at 10pm our time). They said on the news that it was moving in a north-easterly direction. Must be getting almost ready for panic stations there?
Do keep us informed please.
When we heard of the fires are not out of control it was the first thing we both said/thought.

Hang in there guys and do keep us informed.

N & T (and kids).

Comment by Bec Paton on December 2, 2008 at 3:34pm

This was posted on the PKS yahoo group this morning. not sure if you are all on that list so I thought I'd re-post it here.

Hi Everyone,
Hope all of you in the U.S. had a nice Thanksgiving Holiday!!!
Arjun’s Physical Therapist, Bernie Connor is traveling in February to Sydney Australia. She is an amazing therapist, been with Arjun for 3 years. She has the highest levels of PT including Medek.
She is available to visit with families in Sydney, Australia for consultation. Please let me know if you would like me to put you in touch with Arjun’s therapist. Arjun has come a long way with Bernie and his medek exercises.
For more information on medek exercises, you can visit http://www.cuevasmedek.com/
Lots of love,
Inder Seth

Comment by Bec Paton on November 4, 2008 at 6:01am

Hi Aussies!
I have a close friend whose aunt works as a midwife at Mercy Hospital Melbourne. She told me that there is a baby with PKS due to be born this week. Obviously diagnosed inutero. I hope the doctors haven't scared them too much. I asked "Auntie Dot" to pass on my details to the family. I hope they contact us, I think meeting Sarah might help them see its not all bad. I will let you know what I find out!
Cheers,
Bec

Comment by Nic, Terzita, Adam & Alessia Acquarola on September 5, 2008 at 4:55am

http://www.awch.org.au/email%20newsletter%20pdfs/AWCH_EMAIL_NEWSLETTER_MARCH_2005.pdf.

Hi Aussie families. I went surfing the other day and found this article. Look at page 4 ! there is an email address if you are interested in contacting other people with this condition. From what I understand its from NSW and is relatively recent (ie 2005). Not sure if its still valid but give them a try nevertheless. I have.
Interesting comment from our geneticist yesterday ..... "you will know more about this condition than any of the doctors here" aint that the case. I am now going to type up a medical summary of the condition so that each time we take Alessia to the doctors and they ask what is the condition (etc) I will just hand over the information for them to read.

Have a great day all. And do let us know how you get on.

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