“Breakthrough DNA Study Opens Door to New Treatments for Mitochondrial Diseases”
I just read those words and my heart leapt – it really did. Some of you reading this know that my little boy was born with a Mitochondrial disease, Mitochondrial Encephalomyopathy. There is no cure for this terminal and progressive disease that has left my son unable to walk, talk, sit, stand and swallow. Almost daily seizures and intestinal issues are a way of life for him. He’s had ten operations and countless hospital stays, some lasting for weeks. And while a cure may not come in his lifetime, that science is working, and making wonderful progress, on researching a cure put a much-needed smile on my face. But maybe a cure will come in his lifetime, I’ve witnessed too many miracles where my sweet boy is concerned not to believe in the sometimes unbelievable. I’m neither an optimist or a pessimist, just a realist – who prays and talks to God – quite a bit. I also know that my son has survived comas and high CO2 levels that would have sent even the healthiest of beings on to meet their maker. I’ve watched him suffer through seizures that seem to know no end, I’ve held his hand for hours on end in the ICU praying for him to wake up. I’ve cried to God asking him ‘why’, so many times. But children are closer to God, I really believe that. And maybe Joey knows or understands more than I do – that wouldn’t surprise me at all. Maybe my Joey has been fighting so hard for the past nine years because he knew this day would come. The day when a group of talented medical doctors at the University of Miami Health System, acquired the funding to give mitochondrial diseases the much needed attention and research moms like me so desperately want and need for children like my Joey.
You can read the full article here:
I read the following words with tears in my eyes from Dr. Carlos T. Moraes, “Although further studies are needed, lowering the mutant mtDNA should be sufficient to produce lasting changes in the mitochondria. In fact, it is reasonable to expect that a permanent correction of the mitochondrialDNA might be achieved after one or a small number of administrations of mitoTALEN, either as genetic or protein agents.”
This latest breakthrough probably won’t make the evening news and the likelihood of seeing it all over the internet is slim to none. But to me, this is the best headline I’ve seen in quite some time and it gives me hope. Sometimes, that’s all we have to hold on to isn’t it, hope. I hope and pray everyday for my Joey – that he will be full of smiles, the seizures will stay away and the two of us will be able to weather whatever storm is headed in our direction. There is a Tibetan saying, ‘Tragedy should be utilized as a source of strength.’ I believe that no matter what we are going through, no matter how painful and difficult it is, if we lose hope, that’s our real disaster.
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