Hello and love from Adahlia!
Adahlia is an amazing, beautiful and vivacious little girl with an extremely rare blood disorder called Diamond Blackfan Anemia (DBA), a disorder so rare that it affects only 25 babies born worldwide each year. There are only approximately 1,000 people with DBA alive in the world at any given moment. Adahlia’s presence reminds us that every moment of life is a gift.
The symptoms of DBA are varied. Adahlia has only one, very serious, symptom: her bone marrow is not making the red blood cells we all need to survive.
DBA is considered a genetic disease but they find an abnormal gene in only 50% of cases. Interestingly, having one of the gene “mutations” associated with DBA does not mean the person will have any disease symptoms. It is a highly mysterious and poorly understood condition.
Adahlia has needed a blood transfusion every 3-5 weeks since she was only 6 weeks old. It is a lengthy, risky, and uncomfortable procedure. There is no known cure for DBA except a bone marrow transplant, and Adahlia does not have a donor match. She faces a long road of invasive medical interventions and dangerous complications. She is a incredibly strong little being with an intense will to live.
Besides the blood issue, Adahlia is otherwise a very healthy child, growing and developing according to or ahead of all developmental milestones. She is intelligent, curious, loves listening and moving to music, and enthusiastically faces challenges. She loves running and being chased, bouncing and giggling in our arms, pointing at birds and animals, “talking” baby talk and having me echo her words, signing for words she knows in sign language, having stories read to her and songs sung for her, stomping her feet and swaying to music, kissing her stuffed animals, splashing in puddles, and saying “hi” to strangers by raising her palm to them or waving. Her most favorite enthusiasms remain screaming games of chase and infinite variations on peek-a-boo. Adahlia’s laughter and curiosity softens the atmosphere and opens hearts everywhere we go. She is a little climber, a beautiful little girl with wise eyes, and she loves to touch and connect with people.
My hope is that this site will solicit a flood of prayer, love, and positive, healing energy on her behalf. DBA goes into spontaneous remission in approximately 20% of cases. We are doing everything we can for her from a biomedical, natural medicine, physical medicine, energy medicine, spiritual medicine, and oriental medicine perspective. On this blog, I will keep you informed of our progress.
Thank you so much for your prayers. I believe we are all divine beings. With Gods help, may we manifest a miracle.
NOTE: This website is for sharing of information and experience only. It is not intended to provide medical advice. Those seeking professional medical advice should consult with their doctor and other licensed medical professionals familiar with their unique case.