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
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
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...
Abigail Sullivan (now 4 yrs old)
It is absolutely marvelous to hear this story of Abby's
progress and current status. She is not the only child
we have worked with that was so genetically damaged that the
birth parents discarded the infant in
an orphanage. Blessings to you and your
wife beyond any earthly measure that you were willing to
take her from the institution and give her your love and the
being fulfilled, that
you could help her. It does not get any better than to
know that the last 20 years of my research has in a small
way helped you restore a great measure of meaningful life to
Abby. Thank you for sharing this event with
this note arriving in December
that I have to say rivals the "reason for the
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
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
I wrote my
you written yours?