Comments on: Fighting for Their Lives

By: Jessica Gomez

Jessica Gomez — Thu, 10 Apr 2008 03:59:52 +0000

I just got this article from the pyruvatekinasedeficiencysupportgroup.com and I am so happy that someone has done an article about this! My son also has PKD and suffers from Sickle Hemoglobin D disease! He is the only know child in the world with both!!
He has had 40 transfusions to keep him alive!! I am just so happy that there are journalist doing stories like this!! ALL of you it does not matter the blood type…just donate!!!
I know here in my state you can tell them that you want your blood to go to the Children’s Hospital or sometimes the families can get “credit” if you donate in their name. The most important thing you can do is donate!! But please do not donate if you are sick!! I can tell when my son gets “good” blood or “bad” blood. I can also tell when he gets someone’s blood that is very healthy (athletic) vs someone that is not….I am full of gratitute to all of you for wanting to help these kids out!! It is nice to know that the world is not as bad as we think!! I am on the West Coast..I applaud you East Coast!!!

By: Breanna

Breanna — Fri, 04 Apr 2008 19:24:52 +0000

I have PKD also! It is very hard to live with but I have learned to cope! My doctors told my parents I wouldn’t live past the age of 5 and here I am turning 17 in June! Finally another PKD case like me, I have actually found a website where all PKD patients can talk! Thanks FOX for posting this story! : )

By: Janet

Janet — Thu, 03 Apr 2008 02:08:38 +0000

My six-year-old son also has a rare blood disorder… also a congenital hemolytic anemia, but not PKD. At this point, it is so rare, he appears to be the only one in the world with his specific type. He recently received his 57th transfusion. Being a blood donor is hugely important… I would encourage all of you who are offering specific blood donations to give regardless of which child or person it goes to. My son requires O+, CMV negative, irradiated, packed red blood cells, but it also has to be screened for specific antigens as he has began to develop some reactions to donor blood. For anyone who is life dependent on these transfusions, it is important that donors continue to give. Bless you all who are giving now…

And thank you for the article which helps to shed a bit of light on this rare condition. My very best wishes go out to the families and children who are impacted by PKD.

By: sara currey

sara currey — Wed, 02 Apr 2008 15:38:24 +0000

Glad that PKD is getting some coverage. Our 4 year old daughter was born with PKD and has had 44 transfusions to date. We have moved to France in the past year and she receives excellent care here. We are looking into a bone marrow transplant for her in another year or two. We are coping with this disease and are thankful that our specialist here is quite knowledgeable. Thank you for your article!
sara currey

By: Kathryn

Kathryn — Wed, 02 Apr 2008 04:47:13 +0000

Jessica, I have been checking back to see the comments posted. Having been a donor for many years now I understand that the focus of the outreach was to encourage blood donations in general. While understanding that, I do already donate regularly to the NY Blood Bank. Being O Neg, CMV Neg, I know that I can be an on call donor for Roman in the same capacity that his mother is, and I am happy to do so. Please ensure my offer is passed onto his parents. Thanks

By: Jessica Doyle

Jessica Doyle — Tue, 01 Apr 2008 15:49:46 +0000

The moms of these children are so happy that everyone has responded this way, but by having me write this story, they wanted to encourage the public to go out and donate blood to their local blood centers because of the shortage across the nation.

Trust me, by doing that, you are helping Roman (whose blood type is A+), Alexander and Claudia.

It is very hard to donate your blood from across the country and then designate where it will go, but by building up a large, healthy blood supply for these children to choose from, you are ensuring they live a long, happy life. You are also helping other people who might need a blood transfusion.

One out of three people will need a blood transfusion in their lifetime, according to the New York Blood Center.

Thank you so much!

By: c. roberson

c. roberson — Tue, 01 Apr 2008 14:36:45 +0000

I would like to know the blood type of the children and where they live. I or my friends and family around the coundtry would be willing to donate?
Thanks

By: beth -ohio

beth -ohio — Tue, 01 Apr 2008 14:09:55 +0000

I think that knowing you have a 25% chance of passing on this disorder, it was selfish of the Meades to have another child. There are many children that need good homes and they could have adopted. Instead, they decided to bring a child into this world who will forever have problems and a poor chance at leading a normal life. What is wrong with people?

By: Donna Fuerman

Donna Fuerman — Tue, 01 Apr 2008 13:06:08 +0000

I am a blood donor and would love to help these children with a donation on a regular basis. I live in Rockledge, Florida which is 45 minutes east of Orlando on the Atlantic ocean.
Please let me know if this is possible.
Thank you.
Donna Fuerman

By: BONNIE WARD

BONNIE WARD — Tue, 01 Apr 2008 12:34:57 +0000

HOW CAN I GET ON A LIST TO DONATE BLOOD. I GIVE BLOOD OFTEN TO THE LOCAL BLOOD BANK AND I’M ALSO ON BONE MARROW LIST. I WOULD LIKE TO HELP. PLEASE ADVISE.
BONNIE WARD