Paul Robin
 

Hi, all.

I haven't posted much on these forums, although those who remember our old listserv may remember my family, in which my mother and both brothers were diagnosed with genetic sideroblastic anemia.

Sadly, my brother Paul passed away on July 20th, 2008, in Los Angeles, California. Paul grappled hard with his illness and with disability, but at the same time he went forward with his life and fulfilled several dreams.

These forums have been extremely helpful for me and my family. Thanks to all of you who have been so supportive over the years.

Leah Robin.

Dear Leah,

I am so very sorry to learn that your brother Paul passed away. Neil and I have just returned from the AA&MDSIF Patient and Family Conference where several Board members asked if anyone knew how your family was doing. Please accept our condolences on your loss and extend them to your mother, too. Thank you for taking the time to share this news with us. We all look forward to the day when these diseases and the suffering they cause will be a thing of the past.

Sincerely,
Ruth

Hi, Ruth.

Good to hear from you! I hope that you are doing well.

Thanks for your condolences. Although Paul had been sick for a long time, he died rather suddenly, so we've all been in shock. Things have been pretty turbulent for the family in general-- Mom's been in poor health (although not particularly related to sideroblastic anemia) and is moving into a senior's community because the house has gotten to be a bit much. My brother David seems to be pretty steady-- he has gotten a splenectomy and is transfusion dependent. He has made another try at a port-a-cath (earlier attempts have failed because of infections and blood clots), and we'll see if he keeps this one.

My partner David and I got married a couple years ago (after 14 years together), and have moved into a lovely house here in Atlanta. Work remains very hectic for me but also very rewarding.

Hope all is well with you and your family-- I think of you and the folks at AAMDSIF often.

Leah,

I am so very sorry to hear about the passing of your brother Paul. I know it has been a long, difficult road for him and your family. I hope David's health will continue to be stable.
Congratulations on your marriage and new home!
The foundation has changed alot in the last few years, as I'm sure you can imagine. I remember the old days (when you were around) fondly.
Again, my deepest condolences - I hope the turbulence will begin to settle.

best,
Andrea