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Power2Save Transplant Community

Intro & Peds transplant week

Hi all! I just wanted to introduce myself, and also take the opportunity to tell you all about something new this year.

I am Joseph Hillenburg, and my son Benjamin was given his gift of life at 2 months of age, when he received a heart at Children's Memorial (now Lurie Children's) in Chicago. He is now coming up on 6½ years of age, and the best thing we can say is that, if he has his shirt on, nobody can tell the difference.

His transplant has spurred me into greater involvement in the transplant community, and I try to help out where I can. Perhaps most pertinently, I have served on the UNOS/OPTN Patient Affairs Committee, as an advisor to the UNOS IT Advisory Committee, and I was just elected to the UNOS/OPTN Board of Directors, with a term beginning July 1st of this year.

I also wanted to tell everyone about a new effort this year, driven by recipient parents in concert with Donate Life America, UNOS, and many other transplant organizations. This year will be the first observance of National Pediatric Transplant Week (April 23rd-27th), essentially a carve-out from National Donate Life Month.

Please see the note below from Donate Life America:

DLA will also be adding a page on pediatric donation to Donate Life America’s website, DonateLife.net. This page will have information specific to pediatric donation and transplant, and National Pediatric Transplant Week. This page will be live the first week of April, donatelife.net/types-of-don... The National Donate Life Month page on DonateLife.net will also soon include NPTW information with a link to the pediatric donation page.

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Hello Joseph. Thank you for this post. I am also a pediatric recipient parent. My daughter received her lifesaving gift (a heart) at age 6, at All Childrens Hospital in St Petersburg FL and she is currently 13 years old. I applaud this addition of National Pediatric Transplant Week and look forward to sharing this with everyone! Personally, at times, I have felt like I am swimming up stream when it comes to being involved in a forum, such as this one, being the parent and not the actual recipient. There is a great need for pediatric awareness and I thank you again for all you have done in this specific area. Good luck in all your endeavors on the Board this year!

Kindest regards, Jolanda

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Thank you so for sharing this information. So happy for you and your son and your involvement with the transplant community.

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Hi Joseph. My name is Ixel and I was 8 when I received my gift of a new heart and received my second one last year. Thank you so much for sharing this!

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