Help Us find Donors for another baby!
Many of our friends, family, colleagues and complete strangers have reached out to us asking "What can we do?", "How can we help?". We all feel helpless and powerless in this horrific situation and just sitting around waiting for a stroke of luck is just not an option. As with every patient with HLH: the clock is ticking!
Although donating for Miabelle is too late. Her rare DNA and the aggressive nature of her HLH type did not give us enough time to find an adult donor. But there is something we can all do to help other patients battling with blood related disorders, struggling for life. Our daughter was able to fight for more than 13 weeks until a cord blood donor was found, other children don't have that option! Finding an ideal bone marrow donor is a challenging task, but even with the odds being slim it is a challenge we can face head on. She and thousands of patients depend on a donor that could give them a second chance to live.
You have the power to give that second chance!!!
Bone Marrow or, also called, stem cell registries are global. Matching donor searches are global, so no matter where you are you can help.
You have the power to give that second chance!!!
Bone Marrow or, also called, stem cell registries are global. Matching donor searches are global, so no matter where you are you can help.
Please help other familes in their struggle, Miabelle is not the only one!
These are some of the global registries, in alphabetical order, we worked with closely:
- BELGIUM
A simple blood test is what is needed to identify your DNA composition to find a matching donor.
Via the Red Cross:
Via the Red Cross:
This link will list all the centers in Belgium, select the one closest to your home.
-Contact them via email or phone to setup an appointment for stemcell donation.
-They will take blood and establish your typing.
-Then register you in their database.
-Our hospital in the US then runs the database for possible matching.
-Once matched a person of the Red Cross will contact you.
For Vlaams Brussel location we recommend:
The offices of Prof. Dr. Demanet, who has been so kind to provide us with full support. To make an appointment:
-Click on http://www.stamceldonor.be/
-Click on” registreer je”
-à online aanmelden
-à selecteer donorcentrum à UZ Brussel.
For Vlaams Brussel location we recommend:
The offices of Prof. Dr. Demanet, who has been so kind to provide us with full support. To make an appointment:
-Click on http://www.stamceldonor.be/
-Click on” registreer je”
-à online aanmelden
-à selecteer donorcentrum à UZ Brussel.
- The Netherlands
2. Once registered your will receive a package with blood collecting tubes.
3. Go to your personal doctor who will take your blood to store in the blood tubes.
4. These tubes will get processed and registered.
5. Once you are a match you will be contacted for further testing
Thank you Marijs A. for the info provided.
Thank you Marijs A. for the info provided.
- USA
A simple cheek swab is all that is needed to determine if you could be the one to save someone else's life. Please consider participating in our online drive. The Icla da Silva Foundation (www.ICLA.org) is the official recruitment organization for the National Bone Marrow Organization (www.marrow.org) responsible to manage and protect the BM database. This is the process:
It's easy:
Follow the step by step instructions. It will only take 5 minutes.
Complete an online questionnaire of 10 questions, address and name, and order your registration kit.
2. Once you're registered you will receive a BM Kit at home. Strictly follow the basic instructions in your kit to collect a swab of cheek cells and return the kit as soon as you can. I did it Friday and it took less than 10 minutes.
Once the kit is returned it takes 4 weeks for your swab and questionnaire to be processed. As time is of the essence your promptness in returning the kit is much appreciated.
3. If you are matched you may be contacted (although the odds are 1:1,000,000 one is all we need!) A nurse will walk you through the process.
Also, donating bone marrow sounds much more scary than it actually is. With today's technology, stem cells can be removed from the blood without an invasive procedure but just as simple as donating blood.
Read more about donating at ICLA | How You Can Help - Register As A Donor | Marrow, Identified Potential Match Patient on http://www.icla.org/
In case your country is not mentioned above please click o the below link which will detail the registry details of all countries:
www.worldmarrow.org click on 'Registry Information' and then look for your country of residency or citizenship.
Read more about donating at ICLA | How You Can Help - Register As A Donor | Marrow, Identified Potential Match Patient on http://www.icla.org/
In case your country is not mentioned above please click o the below link which will detail the registry details of all countries:
www.worldmarrow.org click on 'Registry Information' and then look for your country of residency or citizenship.
Remember, you can save a life!
Please reach out to your national registry they can guide you were to find a testing enter.
Time being of essence, please do not put until tomorrow what you can do today.
Tomorrow may not be an option.
Thank you all for your generosity.
We much appreciate it because you could save a life!!!
To prepare for either donating procedure, you will attend an information session about the donating process and potential side effects of the procedure. You will have a physical exam to determine your health status and find if there are any special risks to you with either donation procedure. The health requirements are the same for marrow and PBSC donation. 
You decide whethe
