It would be nice if the article left a BLOOD TYPE so donors know.

what is the type, if its my type i would be happy to give

Have you contacted any blood centers? I regularly give at Heartland Blood Center. Is there a way I can desiginate where the donation is to go? What blood type?

I work for a blood center and you have no idea how frightening it can be when you have a hospital patient in need and there isn’t enough blood products. You have no idea how sad it is to call and ask someone to donate and they tell you they don’t have the time.

Children and adults need blood everyday in every state and in every hospital. Don’t worry about your blood type… ask your blood center what you can do for hospital patients in your area. As the CEO of New York Blood Center states “It’s very difficult for us to keep up. It’s a chronic problem across the country. Unfortunately, there are so many genetic blood disorders.” If every healthy eligible person donated there would be no blood shortages.

Please, Donate Blood… you never know who’s life you save!

In reading this article I found myself wondering, how such rare blood disorders occur, Since I myself have been diagnosed with myleo fibrosis which is also a rare blood disorder. I can identify with the fear that one has when you don’t know what is wrong. I will pray for these children and hopes to find a cure. If there is anyway of contacting the parents via email please send me there address.

Gary: My blood type is O Negative CMV Negative and I am a registered blood donor with the New York Blood Bank and have a donor card. When I give blood it is marked with a yellow tag because it is the blood they use for children like yours. My husband and I live in Hoboken, NJ and if you need an “on call donor” I am happy to help. Email me ….

i’m ab positive and i make to many red blood cell or used to but if i could help i wiil thank you

If my blood type matched, i would be happy to donate!

What is the Blood Type????? I would love to give some blood for this little guy!!!!!

My family has gone through a similar h*ll when our twin daughters were diagnosed with coombs positive hemolytic anemia at four months old. The days and nights of transfusions, gamma globulin, many, many medications, hospital stays, bone marrow studies, splenectomy (one of the girls)- it’s a horror no one would want. Thankfully, both are doing well these days, enjoying their teenage years. But, we know how important it was to have help from so many people, especially those who came out to donate for the children. As a result, I donate regularly, and would be more than happy and willing to donate to Roman, Alex and Claudia.

I am an O+, CMV negative donor. Please let me know if there is anyway I can help.

Thank you-

Lois Mandell
East Brunswick, NJ

I’m O Negative, I live in the Washington DC area and work for an airline and would be happy to go anywhere needed to give blood ….. EMAIL ME.

Having just gave platelets, plasma, and red blood cells, I would have loved to have it sent to them. I’m O- and anyone can receive my blood. You need to include the information about how to donate to them and what blood products they need. Love to help.

What TYPE do they need? Why didn’t you put that in the story? Lots of folks could help, me included, if we KNEW what type they need?
Jeff Kidder, Elyria, Ohio

My blood type is O negative. If there is a way that my blood will work and it is able to get to you then let me know what i need to do.

i too, am o-. these children are precious, but it seems as if it would be impossible to designate who exactly gets donated blood. i have 3 healthy children but i always feel the pain the families like this are sharing when i read stories like this- i cry at my computer and pray to God for peace in these people’s lives. i did want to mention the last few times i tried to give blood, in rural sw va to be exact, a few members of the red cross team were quite rude and b/c of that, i have passed up the last few blood draws. i’m ashamed for not looking past them to the bigger picture, but did want to get the message out to (some members of) american red cross to “practice kindness”, as their clients do when they take time out of their days- possibly from work, and have a needle stuck in their arm and risk whatever is they may be risking, all in the hopes that they are saving someone’s life. It is a big deal to be nice. I pledge that i will try donating again, probably still not at that very location, but there are more. Good luck to everyone involved in this story- my prayers are with you.

What’s the blood type? Mine is kind of rare but I’d love to give………….

what type is most desired? Iam 0 NEG. and understand that this type is used in infant needs somewhat. I am willing to donate, however Iam on blood pressure medicine (180 Tarka). If I can help, let me know. 58 yrs old, good health.

Your article is heart touching. There are a few things missing. The blood type needed and the location of these families. ANYONE with O+ blood can donate! This is the universal blood saver of the world. A note to the parents: dont give up. My parents didn’t give up on me. I was diagnosed as a hemophiliac at the age of 3 1/2 when a rabbit bit the top of my finger off. When I was 7 my blood cells started developing normal. I have found out that this is genetics. Usually when a person has hemophilia is can be for life. I don’t know much about PDK but with modern medicine and research there is always hope. And don’t forget that God is always watching over you. You just have to ask him for help.

I am very familiar to the donation process and your article has an incorrect statement. No matter who the blood donation is for there is a 56 day waiting period between donations, this is for the safety of the donor. This is true for autogulous and directed donations, as in this case.

Additionally, it is a mis-nomer that all blood donated goes directly to a specific person or even that it stays within the confines of an area. All blood products are sent to a central location for processing, it is then tranported to the hospital or medical center making the request. Rarely do hospitals process blood products. It would be an impossibility for all blood products to be stored for the use of one patient for an indefinite period of time, this is due to the fact that not all blood types are suitablity for everyone plus there is a shelf life for blood. Blood products are discarded after a certain period of time.

Persons considering donating should log on to the American Red Cross’s website for information on the donating process. The American Red Cross has been supplying the United States with blood products close to 100 years, no other organization is a widely known nor has been performing/perfecting the donation process as long. Log onto http://www.donatebloodnow.org.

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

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

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?

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

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!

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

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

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.

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! : )

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!!!