Rachel's First Protandim

We gave Rachel her first dose of protandim tonight.  We gave her 1/2 a pill in a syringe filled with yogurt.  She didn't like it very much, but mission accomplished!

Ben & Bekah are Baptized

My heart was so full today as Ben and Bekah were baptized.  As I watched them "walk" down into the baptismal font, I was so grateful that they are doing as well as they are, despite their A-T diagnosis. They are so precious and innocent, and I feel so blessed to have them as part of our family.

Janice & Ann's Visit With Mom

Janice and Ann visited mom today and dyed her hair. They reported that mom was very alert after only two days of being on Protandim, and that she was interacting with them in ways that she had not been able to do in a long time. She appeared to follow the conversation with her eyes and was laughing. She also opened her right hand and scratched her nose, something we noticed she had quit doing around her birthday in July of 2011.

Mom Starts Protandim

We started mom on Protandim today.  Because she is so advanced with Huntington's Disease, we started her off on a double dose. We are giving her one pill in the morning and one pill at night.

Ben & Bekah's Report from School

On Tues. I went into Ben & Bekah's classroom to bring some yogurt for dairy week.  I happened to catch their teacher and aide in the classroom without any children. They were so excited to report to me that the last couple of days Ben & Bekah have been doing amazingly well. 


Ben had written a Thanksgiving writing almost completely by himself (something that is very unusual for him to be able to do). They also commented on the quality of his writing. As I inspected it for myself, it looked almost like he had put on a pair of glasses.

They also reported that Bekah had made it through a whole day of math without asking for any help--her first day ever, I believe. They told me to keep up whatever I was doing because they were seeing some major improvements. I told them that the only thing that I had done different was to double their dose of Protandim, an herbal supplement that I had been giving them. On the previous Sunday, I had started giving them a half a pill in the morning and a half a pill at night. 

My heart was full of so much gratitude as I left the classroom that day and pondered on the implications of what we were seeing. I really couldn't ask for a better Thanksgiving gift!

Twins Results from Taking Protandim

We have had Ben & Bekah on Protandim consistantely for about three weeks now (we have used Protandim since 2007, but have not always been 100% consistent with it because it has been very hard to get down them). Ben & Bekah both stayed home from school sick today. I gave Ben his Protandim in icecream like I usually do, but he was not able to hold it down. After he threw it up, he seemed unusually upset about it, but I didn't think much of it until dinnertime when Ben asked me to give him his Protandim again.  I ask him if he was sure as it had made you sick earlier. He said, "Yes mom, I have to have it because it helps me run better."  I asked him how he knew that? He said that when he takes it he can feel his body working better and then he is able to run better. He went on to say that he wants to be a running back in football (his dad and brother are both running backs) and if he takes the Protandim he will be able to run like he needs to. His comments were very heart breaking and exciting at the same time. (If by some miracle he is able to even play football he will probably be the only A-T child ever.)  

But Bekah's comments are what floored me most. Bekah has always struggled in school cognitively, but I have noticed that the last couple of weeks she has been doing better. She is getting 100% on her reading tests and she is even wanting to read at family scripture study which is a big change for her. Her aide at school has even commented that she is finally starting to understand math concepts that she has always struggled with. She works very, very hard to keep up with her class and we are very proud of her for always doing her best. After Ben made his comments Bekah piped up and said that she has to have her protandim also. I asked her why and she said because it helps her think better and she can answer the questions in class. I asked her how it helps her think better. She pointed to her stomach and said because it goes in here and then pointed to her head and said and it makes my brain so that I can get the answers. I was completely taken back. 

I am so excited to see what other positive results we have as we move forward. I was thrilled to get help with her immune system, but I had no idea that I was going to see a cognitive improvement as well and I did not expect to see improvements so quickly.

Healing of Rebekah's Immune System

In the winter of 2006, we spent a lot of time praying and caring for a very sick daughter who was hospitalized for IV's on a couple of occasions. It was during this same time period that her immune system was tested and we were strongly encouraged to start her on IVIG treatments to boost her immune system. Even though we had the doctors from the University of Utah, Pocatello Children's Clinic, and John's Hopkins pushing us to start these treatments, we just never felt right about it (please note that we have a lot of respect for all of our doctors and we do realize and understand that they do have our children's best interest in mind). We simply never could feel right about these treatments. Like most desperate parents, we tried everything - from nutrition boosting with a Vita-Mix, to high doses of vitamins, to foot zoning to essential oils. We really felt strongly that we would find a natural answer with fewer side effects and risks.

In 2007, we were introduced to Protandim (a natural supplement) that was invented by a world renowned scientist, Dr. Joe McCord. My friend had a boy, the same age as Benjamin, who had MD. In 2006, the MD Parent's Project paid for a study of Protandim in MD children. They were seeing some very positive results with the use of Protandim and she thought it might be helpful for our twins. I contacted Dr. McCord via e-mail and he indicated that he thought that there was strong rational that Protandim would provide positive results for our A-T children. He also indicated that to his knowledge Protandim had never been used in any A-T children. It is also important to note that Dr. McCord was already familiar with A-T as he had written a paper in 2002 about the rationale for the use of PARP inhibitors to reduce oxidative stress in A-T cells (we looked into using PARP inhibitors also, but where it was unknown what the side effects of turning off the PARP inhibitors would be we chose not to use them.) We were excited about Protandim and its few if any side effects, so we began giving it to our twins.

In March 2010, we returned to the John's Hopkins hospital in Baltimore, Maryland for our 3 year check-up. The immunologist there was very upset with us for not starting Bekah on the IVIG treatments. We explained to him that we actually thought that she was getting better and asked him to please test her again. We agreed that if her immune tests came back low again, we would once again consider the treatments. When we received our report back from the A-T clinic in April it stated: “Rebekah's immunologic findings are quite unusual...I do not believe that she needs replacement gamma globulin at this time...”

We recently contacted Dr. McCord to ask him if he believes that Protandim would have helped Bekah's immune system. He felt that it was a possibility as Protandim is scientifically proven to be a powerful NRF2 activator.

You can go to pubmed.gov (the website that the medical community uses to validate medical information) and search for the word Protandim. You can also search A-T and oxidative stress - there are about 200 studies out about how A-T is effected by oxidative stress which is significantly lowered by Protandim. Protandim has been clinically proven to reduce oxidative stress in 100% of the people 100% of the time by 40-70%. 

Ben & Bekah's Eye Appointment

Today I took Ben and Bekah to the eye doctor in Pocatello.  Ben especially has been having some symptoms of eye problems.  He appears to have a hard time seeing the computer screen at times and some of the words in books at times.  I know that this can be a symptom of A-T as they start to lose control of their eye muscles.  The doctor said that Ben's eyes looked great as far as vision, but he could tell that Ben was struggling to be able to focus on what he was looking at and would move his head to try and compensate for that struggle.  Of coarse I was hoping that it was just a vision problem, but we will just have to make some accommodations as needed.  Bekah, on the other hand, is still doing well with both her vision and ability to control her eye muscles.

Rachel's AFP Levels Come Back High

Today was an interesting day.  I was driving Dallin and Spencer to Pocatello for a roller skating activity with their home-school group when I had the thought to call the Pocatello Children's Clinic and get Rachel's ears checked.  She had been showing signs of an ear infection and it seemed like a perfect opportunity to have her checked out while the boys were at their activity.

I called the clinic and asked if there was any way that they could see her in the next hour or two. They told me that she would not be able to get in with her regular doctor as he was out of the office for the day. I told them that I would be willing to visit with any of the doctors, so I was able to get an appointment.

When I was called back for Rachel's check-up, I was surprised to pass Rachel's regular pedicatrician in the hallway. We both gave each other a surprised look, but I didn't think much about it until he came walking into the room 5 minutes later. He said that I was one of the most inspired ladies that he knew, because he had been wanting to talk to me in person, but had been unable to get in touch with me. He went on to say that he had just stepped into the office for a few minutes and when I had passed him in the hall he had just been looking at Rachel's file.

He informed me that all of the blood tests that they had run had come back normal, except for her AFP levels that were still reading higher than normal. This is not as conclusive of a test for A-T until after age two, but that test, coupled with all of the other A-T symptoms that Rachel had been displaying, and the fact that she has two siblings with A-T, was enough for the doctor to tell me that I really should be preparing for the worst.

I became very emotional and teary-eyed, because I had thought we were out of the woods since I had not heard back from him. But at the same time, I had a feeling of peace come into my heart that everything was going to be okay. I also realized that the Lord had been very merciful with me in this situation, considering that the doctor had not been able to get in contact with me to make an appointment, so I didn't have to stew about the matter for days in anticipation of a bad-news appointment.  I also realized the tender mercies of the Lord because when I left the doctor's office, I was going back to the company of some of my most supportive friends - the other moms in the home-school group, so I would have someone to share my burden with. Even though this was a hard news to receive, I was so grateful to see the Lord's hand in my life once again.

My Family Today

Family Picture Fall 2010

Back Row: Larry Middle Row: Rebekah, Jill, Ben Enoch, & Dallin

Front Row: Spencer holding Rachel

Ben, Bekah, & Rachel are my three children who show Ataxia-Telangiectasia (A-T) symptoms. Ben & Bekah have a confirmed diagnosis and we do not have a confirmed diagnosis on Rachel, but she is showing all of the signs.

Rachel's Dr. Visit Regarding A-T Symptoms

I took Rachel to the Pocatello Children's Clinic today because of concerns that I have about her. She has started to wobble quite a bit, she doesn't seem to be gaining weight, tires quickly, and she has been falling off of things more than I believe is normal. Of course I am paranoid about her having A-T and  I need to put the issue to rest. The doctor told me that I had reason to be concerned, but I didn't need to get too worried until we had more conclusive evidence. Her lack of weight gain was a concern however, since she was 16 months old and only weighing in at 17 lbs. He then took an alpha-fetoprotein (AFP) level test to see if hers was still coming in high. He told me that no news was good news, so if I didn't hear from him in a few days to assume that everything was normal.

Letter to My Siblings About Mom

The following is a letter that I wrote to my four siblings:

The last few nights I have had great difficulty sleeping, largely due to the fact that my thoughts keep turning to Mom.  I really feel that she doesn't have much time left in this life. For her sake I will be so happy for her to be relieved from the mortal suffering that she has endured for so many years. I don't know what these feelings and thoughts I am having mean, but I felt that I should share them so that each of you will be prepared when the time comes.

I keep having several thoughts run through my head--Where will we bury her?  We have talked about Kanosh. Is this feasible? How do we go about making these arrangements? Where will we hold the funeral?  Who will we invite to the funeral? Who will speak at the funeral? How will we pay for all of this? What kind of traditions do we want to start to honor her life? etc, etc...  I really think that these are things that we need to be talking about and planning.

I have had the great privilege and honor of going through the remaining pictures, geneology, and paperwork of her life that I took home with me the last time that we were all together. I feel like I have hit a gold mine as I go through this information. For the first time in my life, I feel like I am starting to make sense of all of the confusion and hurt and anger that are associated with Mom. It is so healing for me to read her words during her healthy years before mental illness robbed her of her life and us of our childhood. I thank God that she took the time to keep a record of her life so that we could know these things.

She was such an amazing woman who loved us, the Lord, and her fellowman. She spent the best years of her life (and of ours) taking care of us: cooking for us, sewing for us, washing and ironing our laundry, gardening, canning, and nurturing us in so many ways (including taking us to regularly have our hair done and her hair done). She also took the opportunity to better herself by taking college courses and she even learned to make cheese. She served her family also by faithfully working on her geneology which is evidenced by all of the records that she has compiled. She faithfully fulfilled her calling as a visiting teacher, as a teacher in the Primary, and even as a member missionary. There is a part where she talks about making a dress for a lady in her ward so that she would come to church. That kind of charity is really the heart of our mother. 


I'm sure that these things did not come naturally or easily for a woman who spent her first few years of life living in a boxcar in the remote town of Carlin, Nevada and a large portion of her life being bounced around from foster home to foster home, many of which were extremely verbally abusive. One very interesting thing that I learned is that she used to keep the books for the cleaning business that she and Dad owned in their early years together (boy does that sound familiar). My plan is to compile all of her journals, put them in order, and make copies for everyone. I will do something similar with her pictures. I will have these done as soon as time and money allow.

Some people look forward to their parent passing for the big inheritance that they will receive. I feel that I have been given something greater than the riches of this world by having my mother's records so that I could see just a glimpse of who my mother really was. I am so grateful for her life, for her good example, and the foundation in life that she laid for each of us. I hope that each of us can honor her life by building on the good foundation that she set for us.

I love each of you so very much. I have been put in kind of a weird role in life. As the oldest sibling of a family that does not have a mentally-present mother, I have often felt responsible for each of you. I think about and pray for each of you often. Sometimes I don't know what else to do as I watch each of you with your different struggles--sometimes I don't know what else to do for my own struggles.

I would love to hear each of your thoughts, feelings, and ideas about Mom or just about whatever. We have stood together for so many years and I pray that we will continue to stick together as we continue to go though life.

A Sister That Loves You Very Much,

Jill