It has been a while since we have reported on Abby's progress... so much has happened in 2005.  Without overstating it in the least, we have experienced what is no doubt a miracle.  

As I reported previously, Abby was diagnosed with Mitochondrial disease (ragged red fiber variety) in Dec 2004 after over year of relentless seizures and rapid physical decline... during 2004, she had upwards of 50 seizures a day at times, lost her ability to walk (or crawl for that matter), stopped speaking, and was declining rapidly in all areas.  We sincerely believed we were losing her.  In October 2004, we were admitted (yet again) to the hospital for a "swallow study" (she was having difficulty chewing and swallowing her food) and a battery of genetic and other tests.  Shortly afterward, she underwent a muscle biopsy... in December, the result of that biopsy was her diagnosis.  By January, we were discussing with her doctor the possibility of installing a feeding tube.

In late January (after hearing about glyconutrition earlier but being unable to determine what it was and being unsure if it could really help Abby), I spoke with Debora Miklose, whose daughter Emily also has Mitochondrial disease... she confirmed what I had been told.... that Emily's prognosis was at one time as bad as Abby's but that she had experienced a dramatic reversal of her symptoms using glyconutrition.  That was all I needed to hear... I had since been made aware of the "Hope" program at Mannarelief and contacted them immediately.  

In late January 2005, Abby began a  glyconutrition protocol outlined by Mannarelief consisting of (classic) Ambrotose, Phytaloe, Ambrotose AO, Plus, Immunostart, Mannabears, and Glycobears.  She also takes a B-complex with Vitamin C (she was on this prior to glyconutrition in addition to Co-enzyme Q-10 and other supplements with no visible results... we no longer give her Q-10).  

Within days, we could see a change in Abby's energy levels... we were afraid we were imagining things and were cautious about the idea that we might have a tendency to "see what we wanted to happen".  It didn't take long to realize that our greatest hope was being fulfilled.  In April, Abby began to walk again... she was also babbling constantly (she had been mostly silent for months) and began learning to speak again.  Within months, she was running, climbing stairs, and regaining lost abilities quickly.  Best of all, her seizures inexplicably stopped!  There had not been a day since the onset of her seizures in which she hadn't had at least a dozen... we had been on countless medications with no benefit and a myriad of side effects... we have been able to withdraw her anti-seizure medications over the course of several months and she has had no recurrence of seizures.

Abby in now a nearly normal 4 yr old... physically, she appears normal and can do most things that any 4 yr old can do... she is behind her peers in speech, but is gaining ground rapidly (she spent over a year in an orphanage, so this may account for her delays as much as her health problems).  Abby is growing like a weed, eating like a horse, and enjoying every minute of life.  She has quite a sense of humor and can frequently be found trying to yank Mommy's pants down or pulling the dogs sweater over her head while giggling uncontrollably.

I was initially surprised that we were not besieged with requests for information from other families whose children have mitochondrial disease...

and then I began to hear and see how Doctors reacted to the news of our miracle.  Some have discouraged parents from trying glyconutrition, saying "we don't know what it will do to your child"... of course, WE ALL KNOW WHAT THE DISEASE WILL DO TO THESE CHILDREN!!!  I've come to understand that not everyone will be willing to accept the idea that something as "simple" as nutrition can have such a powerful effect.  The Doctors have us all convinced that we need "real medicine"... not some "feel good thing" like glyconutrition.  I myself had to reach a point of desperation where I was willing to try anything to avoid what we were told was inevitable. 

I know I'm preaching to the choir here, so I just want to offer one final thought.  I understand the liabilities associated with Mannarelief/Mannatech telling people that glyconutrition will cure any specific disease or condition.  As a result, it can be very difficult to find information to help guide people suffering with various ailments who might benefit from glyconutrition.  Please feel free to give my name and e-mail address to any families who might need our help.  We'd love nothing more than for another family to experience what ours has in 2005.  Merry Christmas and Happy New Year to you and yours...

God Bless,

Don Sullivan

This  child is another example of over 50 gene defects that are having various degrees of restored quality of life that here to fore science and medicine had nothing of significance to offer.  It is the phenomenon as in Abby's response that keeps me going despite the professional obstructionism and condemnation that has to be overcome that is unfortunately rampant that you alluded to.    It is a lot more fun when you start to win due to the power of so many successes micronutrients foster.    Now we need the basic science conducted to answer how this is possible. 

We have had over 30 anecdotal reports of benefits in mitochondrial defect children.  You most likely have not known this.   The federal law is treacherous that made the supplements available for Abbey, for it states that no claim to treat of cure an abnormal condition can be made.    Legal council is cautious and prevents sharing this information under threat that the company marketing the supplements can be shut down by the FDA, if such preciously good news is written down or spread as the LAWS OF HUMANITY demand that it should be given to those with no hope.   The frustration become overwhelming wanting to help the helpless, but to do so could be damage to all who are currently benefiting by having the warehouse pad-locked by federal agents.

I am sure it is a very fundamental process at the molecular level active in correcting the translation and errors or absences of instructions that are suppose to be written in the genome of these children that has been damaged or altered.   Why?   Too many seemingly unrelated and known to be very different gene defects are responding too well, too often.  There has to be a rational mechanism of action that is primary and fundamental at the gene and gene-audit and repair level.  

I did graduate work in cellular physiology in the 60s and I know it has been shown in the sea urchin and it is so heretical that I repeated and confirmed the experiments.  There is a back-up system for development and differentiation in the cortical cytoplasm not written in nucleic acids in the nuclear chromosomes.  This is not generally known by your average medical scientist.  Who knows where these responding children may lead the world of science that has floundered in the darkness of ignorance?

Thanks you ever so much.  This is best present for Christmas, New Year's and my next birthday I could ever receive.   It makes life and its challenges worth the effort to keep trying until the effort prevails.  As I have said many times in the darkest hours, "When you are right and you know you are right, you are a majority of one!"  Abby adds another measure to that truth and my unwavering determination

Serving,

Dr. Reg

I wrote my Congressman 

Have you written yours?