A Wonderful Gift

[sardsy75]

Hi all

I just want to share this with you all.

My mum's best, best friend (Robyn) is 57yrs old. A little over 3 years ago shewas diagnosed with what we all thought was Parkinson's, but within months it was soon clear that there was something else going on: Multiple System Atrophy (MSA).

Robyn was admitted to a palliative care ward on Sunday and is not expected to live to see the end of May.

The gift? Robyn, with her family's blessing, has decided to donate her brain to research.

In those 3 years we have watched Robyn from being an energetic full-time highschool teacher & mother of three to a wheelchair-bound person requiring 24/7 attention. A person who's organs are literally closing down around her and yet is still able to hold a pretty lively conversation, albeit very softly and slurry (spelling?). It will be a lung infection which will eventually take Robyn from our midst. The mere act of swallowing requires intense concentration on her part and even so, more and more food/drink is ending up going down into her lungs instead of her stomach. It is only a matter of time before infection takes hold.

With the donation of her brain researchers will be able to study her case history from the very first day to the end and hopefully gain more of an insight into MSA and how it might be treated in the future.

I don't usually make requests like this, but if you could spare a moment, please say a prayer for Robyn, her husband and son (who have been her primary caregivers), her two daughters, the extended family and all her friends (especially my mom, who is just not ready to let her best friend die). Don't pray for recovery, instead, pray for a safe journey to the place where she will be comfortable for the rest of eternity.

Thanks for your time

Nadia
28/Qld/Aust

If you'd like to know a little more about MSA, please click on the links below.

http://www.ndrf.org/MSA.htm
http://www.wemove.org/msa/
http://www.parkinsonsinstitute.org/move ... ystem.html

[denisefs]

Hi Nadia,
As i read your post about Robin, I was deeply saddened. I want you to know my prayers are with her and her family and friends.

I also want to thank you for getting me straight on that log in problem!
Denise

[Rubyslipper]

Nadia, Robyn is a courageous person. Thank you for telling us about her. I will keep her and her family and friends in my prayers. What a wonderful gift she will give us all with her donation. Please keep us posted.

[sardsy75]

Ruby, Denise, my deepest and sincerest thanks for your thoughts and prayers.

Robyn passed away peacefully late this evening (Qld Aust time) with her
husband and youngest daughter by her side; and my mom & dad nearby. Her elder son & daughter were unable to make it. They are all
distraught, but happy knowing that Robyn is now at peace.

Robyn's name will live on through her precious gift to science: the
donation of her brain to help in the research of MSA: Multiple System
Atrophy.

Again, thank you for your thoughts and prayers, it has been a great
help during a very difficult time.

Nadia

[sardsy75]

The quote below I posted just before Robyn's passing in April.

Robyn's family have recently found out that her "gift" to science has resulted in approximately 25 years worth of research material. Her one humble yet priceless offering to science will enable Australian neurological researchers to do their best in not only finding out the cause of MSA, but treatments, relief, and God-willing, a cure.

Being a registered organ donator is one thing, but being registered as willing to donate your brain to scientific research is something which those of us with particularly severe forms of RLS (or any debilitating syndrome for that matter!) should seriously consider. It is something that our family and friends may not understand; but when you know that you have the opportunity to continue to contribute to much needed research once your earth-time has passed; it is an opportunity almost too good to pass up!

My mum's best, best friend (Robyn) is 57yrs old. A little over 3 years ago shewas diagnosed with what we all thought was Parkinson's, but within months it was soon clear that there was something else going on: Multiple System Atrophy (MSA).

...

The gift? Robyn, with her family's blessing, has decided to donate her brain to research.

...

With the donation of her brain researchers will be able to study her case history from the very first day to the end and hopefully gain more of an insight into MSA and how it might be treated in the future.

...

IIf you'd like to know a little more about MSA, please click on the links below.

http://www.ndrf.org/MSA.htm
http://www.wemove.org/msa/
http://www.parkinsonsinstitute.org/move ... ystem.html

Sorry guys, got a little emotionally caught up within myself there ... but seriously, it is something we should all consider!