Please Spread the Word and Save Sophia’s Life!

Today’s Blog is a matter of life and death for a beautiful little girl. If you have read the story I published several times – most recently on the Huffington Post, you will know that my husband saved someone’s life with his bone marrow. A simple swab of your cheek gets you registered in the international data base and each day many people are saved by their “matches” with a bone marrow transplant. Please read this story if you have not yet, and get tissues handy.

At any rate, today’s blog is a guest blog – an appeal from Sophia’s dad and mom. Please reach out to anyone you know who may be willing to get on the marrow registry. A donor can be from anywhere in the world, so please share this with people you know everywhere. Sophia needs a match to have this life-saving procedure done. See the photos of this little beauty at the end of the blog, and if you have not done so, go out today and get your cheek swabbed to get on the Be the Match Registry. (details below the photos)
And please forward this blog to EVERYONE YOU KNOW! This MUST Go VIRAL to get the information out!
Thanks and bless all of you for helping Sophia!

Dear Friends and Family,

We need your help. As some of you know, our 2-year-old daughter, Sophia, is very sick. Thirteen months ago, she was diagnosed with a very rare and life-threatening disease of the immune system called Giant Cell Hepatitis with Autoimmune Hemolytic Anemia. There are fewer than 100 cases of children with this condition known worldwide, so the disease and its treatment are not entirely understood. It is considered to be an aggressive autoimmune disease that generally strikes children before age 2 and can progress rapidly to severe anemia, liver failure, or both. Until now, we have been fairly silent about Sophia’s health in order to preserve her privacy. But we are now at a point where we need to reach out for help to save her life.

Sophia has been receiving various treatments, including two different chemotherapies, which have slowed down her disease but have been unable to stop it from progressing. As a result of the chemo, Sophia is severely immunosuppressed and is essentially a ‘bubble-baby’, having minimal contact with people and the outdoors. Her doctors are now giving a third chemotherapy, but if this doesn’t work, then she will need a bone marrow transplant (BMT), possibly within the next month. And that’s where we need your help.

Thus far, after an international search for a matched bone marrow donor, her doctors have not been able to find a ‘perfect’ match for her. Using a donor who is not a ‘perfect’ match decreases the likelihood of success and increases the possibility of short- and long-term complications from BMT. Therefore, we would like to ask each of you, and with your help hopefully others, to please consider registering as a bone marrow donor at bethematch.org (see below for details). Anyone age 18-60, of any race or ethnicity, and in general good health, could be a match for our daughter. If you are of Jewish descent, especially Iranian and/or European descent, then the chance of a match may be higher. Even if you are not a match for our daughter, you may be a match for someone else, which gives you the power to save someone’s life and is why registering is so important.

Fortunately, through all this, Sophia has maintained her good spirits, sense of humor, and playfulness. She loves giving (and getting) hugs and kisses, reading books, cleaning (particularly swiffering the floors and wiping the counters), playing in her kitchen, and having tea parties. She knows the names of all her nurses and doctors to whom we are eternally grateful. It is our wish, more than anything, to see Sophia grow up, play outside, have friends, go to school, and live a long, healthy life.

Please feel free to email this message to anyone you think may be interested. We will be posting it on our Facebook pages after we have a chance to let you all know. At that point, please feel free to ‘like’ our status update and/or post a comment so that more people can see it.

We thank you in advance for your help. If you contact us, please forgive us if we are not able to get back to you right away. Please know that we very much appreciate your support.

Golnaz and Jeffrey

Sophia 2

Sophia one

**********************************************
 
Some basic information about bone marrow donation at BeTheMatch.org:
Step 1:  You must be between the ages of 18-60 years old.
Step 2a: Confirm you meet basic registry and medical guidelines and click all of the check boxes, then click “Go” to complete the online form:
Step 2b: If you do not want to register on-line, you can call
1 (800) MARROW-2
1 (800) 627-7692
Step 3: Receive a kit in the mail, give a cheek swab, and send it in
Step 4:
~1 in 40 registry members will be called for additional testing for a patient-
~1 in 300 registry members will be selected as a possible donor for a patient
Step 5:  If you are selected:
–       You will need to give a blood sample for further testing.
–       You will be asked to make a time commitment of up to 30 to 40 hours over a 4-6 week period to attend appointments and donate.
–       If you donate peripheral blood stem cells (PBSC), you will receive injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream.
–       If you donate marrow, anesthesia will be used
If you live outside the US:
Canada

Germany

Knochenmarkspenderzentrale Dusseldorf
Dusseldorf
Telephone: 011 49 (211) 811-9620

DKMS Deutsche Knochenmarkspenderdatei
Tuebingen
Telephone: 011 49 (7071) 943-1310

Israel

Hadassah Medical Organization
Jerusalem
Telephone: 011 972 (2) 643-4035
011 972 (2) 677-7513

Netherlands

Europdonor Foundation
Leiden
Telephone: 011 31 (71) 568-5323

Norway

The Norwegian Bone Marrow Donor Registry
Oslo
Telephone: 011 47 (23) 07-3770

Poland

DKMS-POLSKA
Warsaw
Telephone: 011 48 (22) 882-9633

Sweden

The Tobias Registry of Swedish Bone Marrow Donors
Stockholm
Telephone: 011 46 (8) 746-8020

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