OT but please read if you have children/grandchildren etc

[trudy o]

Hi everyone,
As some of you are aware, we lost our 4yr old son, Tom Olive in august last year suddenly.  After months of testing, we have found out cause of death was due to a rare genetic condition.  However, there have been 3 confirmed cases of this condition in Australia alone, all within one month of each other, so doctors are now thinking that it may not be so rare - more likely that they don't know much about it and testing isn't even available here - only in Paris in a research lab.

I am writing this as I have opened a facebook page with the symptoms and stories from the other families here in Australia (one little boy is lucky enough to be alive).  Hopefully if enough people read it and pass it on to friends, we may be able to save another child who may be suffering the same symptoms.  I need to stress that Tom was a very healthy little boy, active and other than a few "episodes" of leg/back pain and red urine, there appeared to be nothing wrong with him, so for him to have breakfast one morning and then within hours have passed away, it was a huge shock. 

There are two Tom's (both deceased) with the condition and a little boy in Vic who is alive.
The link is:  http://www.facebook.com/pages/Lpin1-awareness-and-support-group/205301902828376  Please read and pass on.  Thank you,
Trudy

[judydawn]

Trudy o, my heart still weeps for you and your family and now for the others who have had the same outcome.  You have done the right thing by putting this message out there for everyone to see, talk about and pass onto anyone with children.  Thank you 

[em]

hi trudyo
i am apart of this facebook group, little tommy dean who is also deceased is a son of a lovely lady i used to work with here in albury.  i cant imagine what yourself and kam and matt and the other familys affected are going through but please know we are all thinking of you and hope so much that more will be found out about this gene mutation.  i read your and the other families stories and it is just heartbreaking...
thankyou for being so giving and letting us all know what this horrible illness is and giving us a chance to maybe pick up on it in our children. thankyou

[cookie1]

Love to you all and you are doing a wonderful thing making others aware of this. 

[brazen20au]

oh trudy, how awful
how wonderful of you to be raising awareness of it.
take care

[Cornish Cream]

Dear Trudy I am truly sorry to hear about the loss of your son Tom.I have passed the information on to my daughter here in the UK to share with her friends who have young children.I will also pass it onto friends with grandchildren.

[Debbiebillg]

Trudy, My deepest sympathy to you and your family.  I was reading the link to the Courier Mail article where you mention having your daughter tested, how did you go with the testing ? I have a 6 yo, 4yo and a 2yo and am so, so grateful to you for letting me know of this.  Thank you, and I joined your Facebook page and will let all my friends know of your page too. 

[dede]

My heart goes out to you Trudy and your family. What a horrible thing to go through, and so unexpected. You are a very brave person to share this with others and I take my hat off to you. I am going to join your page now and also let other know about it too.
Thank You again and I pray that what you are sharing will save others from the same heart breaking experience.

[Nay-nay]

Oh Trudy o, I never realized you are the Trudy from our Sunshine Coast team!! Angelina sent us all the devastating news at time and Courier Mail article. What a harrowing time you have had! Love and hugs from me. 

[meganjane]

Tears in my eyes as I read this. My heartfelt sympathy.
Well done for making everyone aware, I hope it will help to save many other young children.

[Chelsea (Thermie Groupie)]

With two young boys myself I just can't begin to imagine what your family has been through Trudy.  It brings tears to my eyes just thinking about the loss of your beautiful son.  I will pass this link on to as many people as I can.

[salval]

I can't imagine what your family has gone through losing your precious son, & so suddenly.

My heartfelt condolences to you all, and thank you for raising the awareness to try & help other families.

Karen

[trudy o]

Thanks everyone. 
Debbiebillg - our daughter Laura is a carrier.  They say she will suffer symptoms but it shouldn't be fatal.  They have an emergency plan in place for her just in case as they don't know a lot about it yet.

em - kam is a lovely lady.  We've spoken a number of times and hope to meet soon.

[Ceejay]

You are an inspiration Trudy.  Never forget that hon. 

You are always in my thoughts and prayers. <3

[Snoozie]

Trudy: I have followed from a distance and send deepest consolences for Tom's death.  I am praying your next little one will be free of the disorder.

xxx