Invitation

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.

In love,
Erika Marie

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.

15 thoughts on “Invitation”

  3. I’m praying for your beautiful daughter, as well as for mine. I also expect a miracle on my daughter’s DBA.

    Reply ↓

  4. Praying for your daughter! Im a new mom who is trying to find support groups and any additional help. My daughters condition started in utero. She developed fetal hydrops and we had 4 IUT and 7 transfusions since she’s been born. She is now 4mos old. We have an unknown diagnosis but more than likely a new genetic form of DBA. She too needs transfusions every 2-4 weeks for red blood cells. Her retic count is .03 and her hemoglobin usually is 6.7 to 7 before we transfuse. I read thru some of your blog and am interested in the supplements Adahlia takes. Fallon sees a wellness dr and she too tested for a high metal toxicity. We do drops twice a day for her. Her hematologist suggested to start Fallon on steroids I’m nervous because of all the reactions and side effects of them. Looking for some feedback on anything. Thank you and God Bless!

    Reply ↓

    • Hi Katie,

      I’m so glad you reached out. Steroids are not an option for us at this time for many reasons. Forgive me if my response is a little disjointed — there is a lot I could say on the matter, and I don’t have that long until Adahlia wakes up from her nap!

      First, Adahlia is just above the 50 percentile in height and weight, and I’d like to keep her growing as normally as possible. According to many doctors, small stature is a part of DBA, and so they dismiss it as a concern when it comes to steroids. However, if you look at what steroids do to growth curves, you cannot deny the negative impact. I would encourage you to talk to your doctor about the crucial times of growth for humans. Growth during the first and second year of life is essential to final adult height, and any interruption of growth will impact final height. Another crucial period is during teen years (puberty). Growth lost during these periods CANNOT be made up later — it is accepted as scientific fact. We first told her doctors we were waiting to try steroids until she was 1 year old – and then we told them 2 years old – and now we are telling them we are waiting until indefinitely. I am surprised that your doctors want to start steroids at 4 months. Perhaps she has other things going on with her that the doctors hope will respond favorably to steroids?

      Adahlia suffered from what seemed like intense pain, or an extreme discomfort of some sort, during her first 4 months of life. She screamed almost constantly whenever she wasn’t huddled against us, and she didn’t respond to traditional treatments for colic. When we had her tested, we found that she had high levels of inflammation, especially in the brain. Since beginning treatments for that, she has improved in many ways, and we can barely remember those first few horrible months when nothing seemed to help her. She also tested extremely negatively responsive to sugar and fructose. Adahlia is very sensitive to sugar — it makes her hyper and aggressive. The purpose of me relating this to you, is that partly because of her fragile mood and all we’ve done to stabilize it, I have been unwilling to try steroids. I have heard horror stories of children that went maniac and aggressive on steroids, and we aren’t yet willing to do that to her (or us) for the 3-4 months that it will take to see if steroids are going to have any effect. Of course, in the grand scheme of things, if steroids helped her bone marrow to make its own blood, a few months of mood disturbance may not be a big deal. But steroids do not actually cure DBA, and they can cause much more serious side effects. See this steroid information sheet published by the DBA Foundation for more information on steroid side effects.

      The doctors might tell you that the steroid trial will only last 3-4 months. It might actually last last much longer. If she does not respond to a 3-4 month steroid trial, she will be taken off steroids for a time. But, the doctors will want to try again 3-6 months later, because some children don’t respond initially, but eventually respond. This could be viewed as a good thing. But, it also means that you will be asked, repeatedly, to try them again, and that your child might be repeatedly exposed multiple times to the high-dose of steroids required in a steroid trial. Its not a once-and-done sort of thing.

      There is also no evidence that steroids at a younger age are more effective than at an older age. In fact, many of the most reputable and experienced DBA hematologists suggest waiting to try steroids until 9 months, to give the children at least 9 months of critical (and unrecoverable) growth. Again, I’m surprised your doctor wants to try steroids at 4 months. Please ask your doctor why he or she wants your daughter to try them at such a young age.

      Of course, there are the “cosmetic” side effects of steroids: the swollen, or “moon face”, for example. Steroids will, as I mentioned, affect growth in negative ways and possibly result in a disproportionate appearance. More troubling, perhaps, is the fact that steroid use (even at the very low doses that doctors attempt to wean the children down to) can cause organ and systemic body dysfunction. There is a high incidence of endocrine disorders and diabetes amongst DBA children, and like the growth issue, it is hard to say if that is due to the disease itself, or to iron overload, or to the use of steroids. Additionally, there is the issue of bone density loss. At this point, Adahlia seems to be responding to the iron chelation drug (too many blood transfusions will result in a build-up of iron or “iron overload” in tissues such as the liver and heart, which can be fatal, and so at a certain point, any child receiving blood transfusions will need to have the excess iron removed). Since she is responding to iron chelation, Adahlia can therefore continue to receive blood transfusions when she needs them, indefinitely. I am simply therefore not willing to risk collapse of her endocrine (hormonal) function and pancreatic function, and have her end up with diabetes and osteoporosis by the age of 8 or 11, by putting her on steroids.

      Personally, I would rather us suffer through the temporary pain and inconvenience of monthly blood transfusions, which are less risky today than they were many years ago, than put something into Adahlia’s body that will cause a cascade of further complications, which will all need treated with additional pharmaceuticals. To me, that is moving away from health.

      But, iron chelation drugs and blood transfusions carry their own risks of side effects (loss of vision and hearing for iron-chelation, and anti-body reaction and even death due to reaction to donated blood in transfusion), so there isn’t really a right or wrong. It is a matter of the lesser of two evils, except that, in a way, they are blessings, because if these treatments did not exist, your child would not still be with you. (!) Honestly, its a tough situation and you have my empathy. These are not easy choices.

      I have found that the DBA community is fairly well-divided on the subject of steroids. It has been said that some groups (patient-based) favor sticking with blood transfusions, while most doctors favor trying steroids. You are the mother: It is up to you, and it is your right, to what you feel best about choosing, for your child. Don’t let anyone try to convince you otherwise. For me, with my education and understanding of natural medicine and health, my belief in the fundamental wisdom and power of the body to heal, and my desire to limit pharmaceutical “dabbling” with bodily processes, choosing blood transfusions over steroids seems like the only real option.

      I am not a doctor and cannot give medical advice. Everything I’m about to say to you, then, I would ask you to discuss with your medical doctor and then make your own choice. For legal reasons, I cannot stress enough that what I’m about to say is not a medical opinion. However, as a mom and friend with a child in what I know is a very distressing situation for you, I would suggest the following:

      Try to limit sugars if you’re breastfeeding, and if you are not breastfeeding, put your daughter on goat milk. If you cannot get her to drink goat milk and must use formula, use one that is made with natural sugars and lower in sugars if you can find it. Sugar is not a friend when it comes to health, and especially in chronic disease. Give her fish oils in the morning to help reset her adrenal function — use a brand like Nordic Naturals Infant DHA — a brand of highest quality that tests their products regularly for heavy metals and other toxins, and publicly shares the results of their tests, because heavy metals can be a problem with lower-quality fish oils. Follow the dosage on the chart on the box, giving at least that amount. Fish oils are an anti-inflammatory. Taken in the morning, they help to regulate cortisol, and therefore lower the stress response. A body in crisis is under stress, and the stress hormones produced worsen the body crisis, creating a vicious loop. In particular, DBA anemia seems to worsen with stress and change with hormonal fluctuation. Since chronic disease and inflammation go hand-in-hand and inflammation is found in nearly every chronic disease process, my guess is that your child (and probably most DBA kids) could use some help in lowering inflammation and stress hormones. Perhaps the fish oils will help. Please note that it is recommended to stop taking fish oils 5-7 days before a transfusion, since fish oils can thin the blood and make it harder for the blood to clot.

      Our daughter takes blue-green algae (again, a high quality brand free of heavy metals) because she tested positive for it. Blue-green algae has a dual purpose: it helps remove heavy metals and viruses, and it helps to build blood. If your daughter is not on probiotics, consider starting her on infant probiotics, which can be added (in addition to the blue-green algae) to milk when not breastfeeding, if you use bottles. There is some concern that algae has too much iron in it. I can say that it has not been a problem for Adahlia — she is taking exjade to remove the excess iron from her body, and her iron levels continue to drop.

      If you can find a reputable naturopath, or an integrative medical clinic, take your child to be nutritionally analyzed. It will cost $200-500, depending on the tests you choose. We did a couple of tests, and they mostly corroborated each other, although there were some differences that one picked up on and the other did not. Our daughter was deficient in many vitamins and anti-oxidants. She was also low in a couple of amino acids, both of which are antioxidant and anti-inflammatory for the brain. She is on liquid and chewable supplements for her assorted vitamin deficiencies.

      Whether or not you do nutrition testing, talk to your doctor about giving your daughter B12 and folate. Folate is necesssary for DNA repair and helps instigate the bone marrow into making blood. Like all supplements, some forms of folate are more absorbable and are of higher quality than others. When Adahlia was 27 lbs and just under 36 inches, we were told by her hematologist that she should take 1 mg Folate per day. I break the capsules open and dissolve the folate powder in water, which I then give to her via a syringe in her mouth, and she takes quite willingly. We just started doing this mega-dose of folate about 6 weeks ago, and she has gone the longest she’s ever gone between transfusions with this addition of a mega-dose of folate (5 weeks, 5 days between transfusions). Adahlia is also on a mega-dose of vitamin b12.

      It sounds like you may already be doing homeopathy. Keep it up, and ask your homeopath or natural medicine provider if testing for viral infection might be warranted. Our daughter has repeatedly tested extremely positive for a sub-clinical and stubborn infection of the interstitial matrix. This means that she has an infection that is non-discernible by biomedical standards (ie, it is not causing a fever) but it is nonetheless alive and doing something within the deep layers of her cellular system. Sub-clinical infections are notoriously responsible for chronic inflammation and other chronic, degenerative conditions (such as the spirochetes sometimes found in lyme disease). Interestingly, the conditions they cause tend to worsen (ie, the infections seem to thrive) on sugar. Thus, we avoid sugar. For a similar reason, we take probiotics to help increase the beneficial organisms in the body, as beneficial and harmful organisms in the body tend to live in an inverse ratio to each other. Very important: We are also doing homeopathic spagyrics and chinese herbal medicine to clear the infection… and it has appeared to come and go and come again… it is indeed, stubborn. Your daughter may or may not also need support for her stomach and spleen function, and for correcting an acid-base imbalance. The body must be in an alkaline state in order to be healthy. Chronic disease states and acidic states tend to go hand-in-hand — you may need to help your daughter reverse the acidity in her tissues.

      Adahlia, like your child, tested positive for heavy metal toxicity, and the blue-green algae should be helping with that. (We have not retested her since she tested positive nearly a year ago.) It is hard to say, with heavy metals, if they are the cause of disease, or a product, because a chronic-disease-burdened system cannot detoxify as effectively as it normally should, and so heavy metals build up when a healthier system would have simply gotten rid of them. Whether cause or effect, heavy metals are not helpful to health, and you are doing the right thing (in my personal opinion, anyway), in working to help her get rid of them!

      Personally, I find it interesting that steroids work for a large percentage of DBA children. If you look at the use of steroids, you will see that they are often indicated for extreme inflammation — insect bites that cause an extreme inflammatory response, auto-immune conditions, etc. If you think about what I’ve written about Adahlia’s condition, you might think that perhaps, actually, steroids would work for her, since she seems to test positive for inflammation. BUT, if that is true (and I do assume it to be true), then that means that natural remedies that work in an anti-inflammatory capacity should also be able to help. Like with many natural remedies, however, it will likely take longer for what we are doing to work than it would take with pharmaceuticals, because natural remedies work at resolving the root of the issue, in a gentle, but persistent way, without throwing the body into a crisis reactivity mode. I know of people who have beaten cancer, multiple sclerosis, and other chronic, degenerative, life-threatening, and inflammatory conditions with the aid of natural, homeopathic, and chinese medicine. For this reason, I think I have a chance of being successful in helping to cure Adahlia without the use of steroids.

      I believe this is possible because I believe that there is more than meets the eye when it comes to genetic disorders. I believe the DBA gene functions like the cancer gene. Having the cancer gene does not necessarily mean you WILL get cancer. Whether or not you will get cancer depends upon multiple factors. Poor nutrition, smoking, exposure to toxins, lots of chronic stress, systemic inflammation, and other factors will tip the scales in the direction of cancer, and perhaps increase the likelihood of actually getting cancer. Like with cancer, I believe that the DBA genes are simply an indicator of something that could happen. They are a weak point in the chink of armor, a susceptibility. They are also a call to rising above, a call to responsibility, to strength, and a chance for soul growth. Having DBA is an opportunity to endure a very tough situation; it is a call to greatness of humanity and heart.

      Hopefully this information is helpful to you. Hearing from you, and other parents, of children with DBA helps inspire me to keep going with this website. I am so dedicated to finding a natural resolution to this disorder, for Adahlia and our family, and for others. Blessings and love to you and your little one. Please stay in touch.

      With Love,
      Erika

      Reply ↓

  5. Hi Erika,

    We met about a year ago at OHSU my daughter also has DBA, I lost your contact info you gave me I was wondering what naturopathic Doctor did you see in Portland? My daughter’s iron is high and exjade seems to not be helping any, so we need alternative medicine asap.

    Praying for your little cutie.

    Thanks,
    Katie

    Reply ↓

    • Hi katie, I remember you! I am looking into it for you and will send you an email if I find anything useful. Unfortunately, none of the alternative or natural methods we used were successful at chelation and we are using Exjade — and we are not sure if it’s workinthat great for us, either. I’m assuming your docs will recommend desferral soon if she’s getting critical. It’s tricky finding an ND (or anyone else for that matter) willing to do chelation on a tiny child. But I am seeing if anyone has any suggestions and will email you when I hear back! Love and light to you and your little ones. I’ll be thinking of you!

      Reply ↓

    • Katie, I have contact information for an ND in portland who does chelation for children with ASD (autism). Will be sending it to your email address, as well as a secondary recommendation if the first doesn’t work out. Warmly, Erika

      Reply ↓

  8. As a photographer I take pride iin hobby and mmy work, its clear that you do with
    your educational blog post. I used to be blessed to find
    it here. So that I can find my way back here, thanks for posting this information and I’ve sazved
    the website!

    Reply ↓

  9. God bless your child. My dear friend’s daughter may not make it through the week. She had a bone marrow transplant in January and they said it took but other complications. They have done all they can. She is home resting comfortably. She has been sleeping since yesterday and we are still praying. We shall pray for your sweet one as well.

    Reply ↓

    • Thank you Sherri. I do not know if your friend’s daughter is the child who recently died – but whether or not she is still with her family, I pray they all feel love, comfort, and supported in this time. So much love to you all.

      Reply ↓

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.