Hello and love from Adahlia!
Adahlia is an amazing, beautiful, inquisitive, and vivacious little girl with an extremely rare blood disorder called Diamond Blackfan Anemia (DBA). It is a blood disorder so rare and mysterious that doctors identify it in only 25 babies born worldwide each year.
There are only approximately 1,000 people with the symptoms of DBA alive at any given moment. There are likely many more people who carry genes that have been implicated in DBA, but do not express it or have any noticeable symptoms.
The symptoms of DBA are varied and range from life-threatening to unobservable. Adahlia has only one very serious symptom, the primary DBA symptom: her bone marrow is not making enough red blood cells for her to survive. Red blood cells from transfusions typically live only 3-6 weeks post-transfusion. If Adahlia does not receive a blood transfusion from a blood donor, she would die after about a month and a half. Adahlia’s continued presence on earth reminds us that every moment of life is a miracle, a gift.
DBA is considered a genetic disease, and there are perhaps a dozen different genes that have been implicated in DBA, with doctors still finding more. Yet, doctors 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 — they could live a completely normal life. Additionally, a baby with DBA symptoms and a genetic mutation can be born to parents without genetic mutation, who have no symptoms, and no knowledge of this disease in their family histories. What is causing DBA? How can one person with a mutation be fine, and another person with that same mutation be unable to make their own red blood cells? Perhaps even more interesting, persons with DBA can go in and out of remission, able to make their own blood, and these periods of remission or triggering of disease seem to be linked to hormonal events such as stress, puberty, and pregnancy. Any way you look at it, DBA is a highly mysterious and poorly understood condition.
Adahlia was first rushed to the hospital in need of a blood transfusion when she was only 6 weeks old. At that time, her hemoglobin was only 1.9 — which is barely life-sustaining. When she was nine months old, we were told that a mutation had been found in one of the genes of her DNA. But, there is little anyone can tell us about what that specific genetic “mutation” means to her condition, prognosis, et cetera.
Blood transfusions are lengthy, risky, and uncomfortable procedures that requires an IV to be kept in place for four hours — and IV needles hurt! It is tall order for a little being. Yet, when I tell Adahlia we need to go the hospital for a blood transfusion, she only looks a little sad, nods, points to her elbow crease and makes the sign for “hurt.” She doesn’t scream or fight. She greets the nurses and plays in the halls as if the hospital were her home away from home. She faces each one of her medical procedures with courage and strength.
There is no known cure for DBA except a bone marrow transplant, and Adahlia does not have a donor match. We have chosen not to give her steroids, which can help up to 80% of children enter remission (and be able to make their own blood), but which come with a long list of undesirable and irreversible side effects and health complications. Adahlia faces a long road of invasive medical interventions for the rest of her life, and the potential for dangerous complications. Yet, Adahlia is an incredibly strong little person with an intense will to live. I am awed by her on a routine basis, and to witness her courage and grace throughout this ordeal humbles me to tears.
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 clapping to songs, 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 daredevil climber, a beautiful little girl with wise eyes, and she loves to touch and connect with people and animals.
My hope is that this site will solicit a flood of prayer, love, and positive, healing energy on her behalf. DBA is a mysterious medical problem but it also comes with its own unique brand of mysterious hope: it goes into spontaneous remission in approximately 20% of cases. This means that the children are suddenly able to make enough of their own blood to no longer need blood transfusions. We are doing absolutely everything we can for Adahlia from biomedical, natural medicine, physical medicine, energy medicine, spiritual medicine, and oriental medicine perspectives. We’ve received considerable help — emotionally, spiritually, and financially. If you’d like to help finance our quest to cure her, we’d welcome your assistance. If I can uncover a natural cure for her, it would have great implications for all the other children and families that struggle with the physical, financial, and emotional tolls of this disorder. 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, that all faiths are beautiful and have echoes of Truth, and that anything and everything is possible. With God’s 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.