Update On Our A-T Children

Yesterday we returned from our 3rd trip back to John's Hopkins Hospital in Baltimore, MD where we had our three
A-T children evaluated as part of a research study that we have been a part of since 2007.

As usual, it was great to see all of the doctors and nurses from the A-T medical team. They are always very kind to us and give us very helpful information and feedback about our children and A-T children as a whole. It is very helpful to meet with a team of people that not only study and research A-T, but see many other A-T children from all over the world.

Our suspicians that our 9 1/2 year old twins, Ben & Bekah, are doing quite well compared to most A-T children at this age, was confirmed at this visit.The doctors are very intrigued as to why this is. Our next step will be to do some more extensive genetic testing. They are wondering if they are among a very small percentage of A-T children who are making just enough of the ATM protein, that most A-T children are missing, so that they are functioning mostly normal or are they a handful of children in the world with A-T who make none of the ATM protein, but for some reason are doing relatively well???? While at the clinic, it was also confirmed through examination and sibling history, that our 2 1/2 year old, Rachel, does also have A-T. Her current development would be more typical of what they would expect to see for a 2 1/2 year old A-T child.

Larry & I are still convinced that it is the herbal supplement, protandim, that has significantly helped, and continues to help, our A-T children. The reason that we feel so strongly about this is that our children were headed down the digressive slope that all A-T children go through, but we watched them get better and improve with the consistent use of protandim. Most of the changes we have witnessed have been slow, but extremely significant and life changing. Bekah's immune system went from needing gamma globulin treatments back to normal and we have seen significant cognitive improvements in her as well. Ben has stopped choking when he eats, spilling his drinks at the dinner table, his balance has improved significantly and he was finally able to ride a bike all on his own at age 8 1/2, his walking and running have greatly improved, and we are starting to see positive changes in his speech. They also now both have the normal energy of any child their age. There was a couple year period when Ben & Bekah were riding in a stroller at school because of fatigue and bumping into other children being a problem. We have not experienced this problem in well over a year and they no longer have a stroller at school. Slow growth does continue to be a concern for them and they do still have some minor issues that set them apart from normal children their age (some drooling, small motor difficulties, and a little instability in walking), but if they were to get no worse than they are today, we believe they could go on to be independent and lead relatively normally lives.

In addition to watching positive changes in our A-T children, we have also seen positive changes in our friends and family who have had chronic headaches, Huntington's disease, Parkinson's, MS, psoriatic arthrites, and diabetes with the consistent use of protandim.

We did talk to the doctors briefly about our suspicions of protandim being a significant help to our children, but it is not something they are willing to hang their hats on. They did, however, encourage us to keep taking protandim if we felt like it was helping them as it is a natural product that has had no side effects.

Dr. Crawford, the neurologist, also commented that their ability to track with their eyes is incredible. He said that they are in the top 1% of A-T children with this skill level that he has ever seen. We also learned that all of the major damage in A-T children stops by age 14, so we do still have another 4 1/2 - 5 years to get through with our twins where breakdown and damage can occur.

We have always hoped for the best and will continue to hope for the best as we move forward on this A-T journey with our children. We also give great credibility to prayer in our lives and are so grateful to be surrounded by so many family and friends who have been their to support and love us as we have went through this journey.