http://www.dbafoundation.org/

   This cause couldent be any closer to our hearts as our daughter Kylie Jae was born with Diamond Blackfan Anemia.

Diamond Blackfan Anemia (“DBA”) is a rare blood disorder, characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells.

About 50% of DBA patients have abnormal features of the face, head, hands and especially thumbs. They may also have heart and kidney defects. Many children are short for their age and may start puberty later than normal.

Treatment includes steroids or transfusion therapy. In severe cases that have not responded to any treatment or in cases where the side effects of the treatment options become overwhelming, and a match is available,  a stem cell transplant can be used to cure the patient of their anemia and blood transfusion dependency.

Sadly, due the severity of our daughters particular case of DBA she spent the first two years of her life institutionalized, vent dependant and in a wheelchair and the following five years hospitalized more than at home.  She has required well over two dozen surgeries and procedures, from open heart surgery, to cleft palate repair and even eventually requiring an experimental, risky, stem cell transplant.

Kylie Jae with her perfect stem cell match and sister, Jordyn Lynn in summer 2005

Jordyns stem cells on May 5, 2005 about to be infused into Kylie

    Her diagnosis eluded her doctors for the first year of her life and as a result, an episode of Mystery Diagnosis was recently filmed and aired about our family.

http://www.youtube.com/watch?v=0WdpgZA6A9s

Starting in 2003 I started keeping a journal to inform family and friends about her medical status since it fluxuated greatly on a day to day basis. That is where my love of blogging began. It became free therapy for me and the friends we have made because of it have changed our lives, for the better.

http://www.caringbridge.org/nj/kyliejae/

Kylie and Jordyn, summer 2011

So, I speak for ALL my DBA mommies and daddies when I say this- I implore you all, my friends new and old.  Be the hero, save a life, donate blood and bone marrow…. our kids lives depend on it.

Fundraising is IMPERATIVE for research into this orphaned disease. Please, help us fund the research that literally SAVES OUR CHILDRENS LIVES!

DBA Fundraising Opportunities

http://www.dbafoundation.org/fundraisingact.php

MORE INFO ON DBA

About DBA

http://www.dbafoundation.org/documents/DBA_Brochure_2.pdf

About Transfusion Therapy

http://www.dbafoundation.org/documents/Bloodtransfusiontherapy.pdf

Congenital Anomalies of DBA

http://www.dbafoundation.org/documents/factsheet_CogenitalAnomalies.pdf

About Stem Cell Transplant

http://www.dbafoundation.org/documents/StemCellTransplant.pdf

About Steroid Treatment

http://www.dbafoundation.org/documents/Corticosteriods.pdf

About Chelation

http://www.dbafoundation.org/documents/Chelation.pdf

Resources about DBA

http://www.dbafoundation.org/documents/35110_17_DBA_Resources_Fact_Sheet_7_7_2008.pdf