It sounds like an incredible headline from a tabloid, but its true: Scientists cured DBA in mice! (click to read the research article).
It is the best news from the biomedical front I’ve heard in years, ever since the hematologist told us he suspected Adahlia suffered from bone marrow failure due to genetic condition, and that we were in for a marathon, not a sprint.
I’ll never forget how I felt in that room. I could not believe him. It just didn’t seem possible that Adahlia had some incredibly rare, disabling disorder. And his words didn’t sound like friendly advice, they sounded like a curse. After all, she was only 6 weeks old. Nothing like this was expected or suspected in our family histories. Who had even heard of DBA? Why was he jumping to damn her to an incurable condition, to pain and impairment?
If willpower could change reality, he would have been wrong. But he was right.
Since her birth, we’ve done more interventions from a multitude of medical traditions for Adahlia than I could possibly count. And they have helped her. I know this because the hematologists weren’t the only ones who have been right. The chinese herbalist has been right. The shonishin (Japanese acupressure) practitioners have been right. The Amish healer was right. The naturopathic physician’s nutritional analysis was right. On and on. Each person’s expert diagnosis has illuminated a different piece of the puzzle. And so we have acted upon their advice, have given her supplements and treatments, and we have seen her improve in many ways — because the failure to produce red blood cells is actually just one of DBA’s many mysterious symptoms.
She’s thriving in many ways. But, she still doesn’t go more than 5 weeks without needing a blood transfusion.
She’s still not making enough red blood cells to survive.
Every transfusion is a struggle for me, as I counsel myself to remain steadfast and to not give up hope, to focus on all the positive changes we have witnessed.
And, moreover, to learn the true meaning of inner peace, to be aware of a larger reality that I have been privileged to glimpse and share, to know what it means to be centered in a calm beyond the storm of loss and hope and desire and fear. To learn to let go of hope as much as to let go of anger. To be able to perceive and accept what is, and to see joy and beauty and grace as it is, without wishing or thinking to change or improve it.
Yet, as the title of this post suggests, I have recently been offered an unexpected hope.
A researcher has been able to cause and cure DBA in mice who have bone marrow failure caused by a genetic mutation to RPS19 – which is a ribosomal protein. They cured it by injecting the DBA mice with a virus that has the correct version of RPS19 attached to its DNA, so that when the virus entered the mouse cell and infiltrated the cell machinery, so that the cell would create more copies of the virus, the cell also began making copies of the correct RPS19 gene. The result? The mice were cured.
It is called gene therapy, and its a relatively new and very controversial field. Its controversial because years ago, it was approved for a different incurable genetic condition, and it worked, but then all the patients developed leukemia and so genetic therapy was stopped.
The researcher in this case states that he has seen no evidence that DBA gene therapy would then trigger leukemia, partially because it is more selective about which cells it invades. There are other concerns, of course, about what other functions would be affected by this therapy, because researchers still don’t understand all of the far-reaching effects of individual genes. The therapy is still a long way from being approved for the first human trials. But it is a strong positive first step towards cure via gene therapy.
There are a dozen or more genes that seem to able to cause DBA. The researcher chose to focus on RPS19 first because it is the most common mutation that causes DBA, and because it seems fairly straightforward: those with the RPS19 mutation typically don’t have additional complications that can occur with some of the other gene mutations.
Adahlia does not have RPS19 genetic mutation. But if gene therapy does prove to be a cure for DBA for RPS19, then scientists will eventually try it for the other gene mutations as well. Since Adahlia does not have a bone marrow transplant match, gene therapy is her best hope for a cure from western medicine. (Honestly, I do not know if I would elect to risk her life with a bone marrow transplant even if a match existed — and I am not alone in that opinion; in fact, a prominent expert DBA hematologist told me that he wouldn’t recommend it for her, since she is so healthy otherwise, it wouldn’t make sense to risk her life with a failed bone marrow transplant when she can continue to live with transfusion.)
It will likely be years, even decades, before gene therapy is approved for Adahlia’s genetic form of DBA. In the meantime, we will continue to do everything we are already doing from a natural medicine perspective. Genetic mutations are not as uncommon as one might think. It is quite possible to have one of the DBA genetic mutations and not have DBA. One of the amazing mysteries of the body is the expression of genes. Something triggered the expression of that gene in Adahlia. I believe it is possible to turn it back off, to turn a different gene on, and get her body turned toward a state of healthy expression.
But just in case I’m wrong, it’s absolutely wonderful to have a new hope — to know that biomedicine has devised a very real cure and is working on it making it patient reality.
It takes nothing away from the real lesson here, from the opportunity this provides to see something truly powerful. Cure or not. Hope or not. Neither of those things are the point.
The point is that the only reality is what is. Not the future – bad or good. Not the past. Not the way we wish things could be. The only reality and the only thing that matters is what is actually happening. As it happens. Right now.
If you reject a moment, you reject life.
If you reject life, you reject yourself.
Accept life, and accept yourself.
Love yourself and accept the moment.
Watch it change.
Take a breath and look around you.
And then take a look within you.
This is what is.
This IS what is.
Accept yourself and love the moment.
Watch it change.