Run Across Alabama For Elliott Schotz

Last Laugh

2010-05-10T08:34:00.000-07:00

Obituary :(

2010-05-09T10:05:00.000-07:00

Elliott Beebe Schotz, age 2, of Decatur, Alabama, died on 5/9/2010 of Tay-Sachs disease. He was born in Decatur on November 20, 2007.

In his two years, Elliott taught those around him to embrace each day and brought many people together for greater good. Elliott inspired a Run Across Alabama in July 2009, completion of a friend's first marathon in February 2010, and a continuous 100-mile run by another friend at Delano Park in March 2010.

Elliott’s interests included: sunshine, the beach, pacifiers, shiny balloons, wind, cuddling, animals, Ember (his bedside companion), going for walks, kicking in his bouncy seat, and his sister, Fiona.

Survivors include his mother and father, Eliza and Eric Schotz, and his beloved sister, Fiona Schotz, all of Decatur. Surviving grand parents include Sara and Donald Beebe of Kennesaw, GA, and Herbert and Louise Schotz of Irma, WI. He also is survived by aunts and uncles, Rebecca and John Morehous of Guntersville and Michelle and Chris Schotz of Gleason, WI, and his cousins Sara and Emily Morehous and Jordan and Riley Schotz.

A memorial service and celebration may be scheduled at a later date.

The Schotz Family wants to extend heartfelt gratitude to all who helped and supported throughout Elliott’s illness. The family requests that all memorial expressions be offered in the form of a card or a donation in Elliott’s name to one of the following organizations: 1) National Tay-Sachs and Allied Diseases Association (www.firstgiving.com/run4elliott) and/or 2) Hospice of the Valley (hospiceofthevalley.net).

RESEARCH

2010-05-02T16:00:00.001-07:00

We are very excited to report on great progress at Auburn University. Two cats with a HEX-A enzyme deficiency (like Tay-Sachs) have been successfully treated by gene therapy at the college of veterinary science. This could be the cure we are all working towards. Funding is needed to continue this work and hopefully begin human clinical trials in the next 2-5 years. The picture above shows Elliott, Fiona, and Dr. Doug Martin of Auburn Univ at the 2010 NTSAD family conference in St. Petersburg, FL (April)

10 kilometers I Will Never Forget

2009-07-07T06:02:00.000-07:00

4 Days of Pain that will fade and 10 kilometers I will never forget
by Eric Charette
Original Post from www.siriusultrarunner.com

There will always be many fond memories of the 4 days that I spent running across the state of Alabama with Eric Schotz and Jon Elmore as part of Team Elliott to raise awareness for Tay Sachs, but it was the last 10 kilometers that I will never forget.

What started as a small idea by Eric and Jon, had blossomed into an enormous event that pulled together people from all walks of life, many of whom had never met each other. From the people who drove the support vehicles to the people holding signs on the side of the road, to people who handed over their hard earned money just because they were so moved but what was going on, Run Across Alabama had become more than any of us ever expected.

Each day we faced grueling miles of rolling hills and long straight-aways amidst beautiful Alabama back country. Together we pushed ahead on very little sleep and every morning we woke with more pain than the day before. What we left out there on those country roads was every ounce of effort, will and determination that we had. Three guys, who had never run this type of distance in a week, let alone in four days, gave it everything they had to show that if you believe, anything is possible. Together we shared immense highs and bottomless lows. We endured through the hurt, baked in the summer heat and in the end, we covered 183 miles from Mentone, AL to Red Bay, AL.

The pictures that were taken will help to preserve the memories and to bring this event alive for people who were not lucky enough to be there. The stories that we will tell in the future to our friends and family will help us to relive the physical and mental fatigue that we went through, all for one little boy that has a battle in front of him more difficult that any of us will ever know. There are things that happened we would like to forget and things that we would rather keep amongst the three of us; thoughts, emotions and sacred memories that belong to us. Yet I want to share with you the most vivid and moving memory that I have from Run Across Alabama. One that, even days later, brings tears to my eyes because of how powerful it is.

The final day of Run Across Alabama was a short 29 mile stretch, which when compared to the three previous days of around 50 miles each day, seemed relatively easy. Very early in the morning, a small pack of runners had fallen behind the larger pack, which was lead by Jon Elmore. Over the first three days we tried our best to stay together, but it was clear that today it wasn’t meant to be. Personally I had dropped out after hobbling through the first two miles on ankles that I could barely put any weight on, let alone run. Just a few miles later, Eric Schotz rolled into the 3rd crew stop with Linda Scavarda, several minutes behind the rest of the pack and they were walking. Eric had developed severe pain in his left quadriceps that was very similar to a strain that he suffered a few years ago. Eric wrapped the leg and tried to run, but made it no more than a few steps before he was grimacing in pain. Despite being in tremendous pain myself, I knew Eric's determination to finish would lead him to walk the rest of the distance if he had to. I grabbed my visor and immediately started walking with him.

We were joined in our walking by Linda, Joey Butler and John Nevels. These three had also run the day before for significant distances and were equally as fatigued. Together we set out at a relatively fast paced walk. Over the next 8 to 10 miles, we would occasionally try to run again, but each time we would make it no more than 4 or 5 steps before stumbling back to a walk. Despite the pain, we had very high spirits as we shared sausage biscuits from a gas station and continually dared John to run ahead to catch the lead pack and then back to us in under a certain amount of time for our entertainment. For the first time in days, we were taking in all of the landscapes and the scenery that surrounded us. We were eventually joined by Eliza (Eric’s wife), Elliott and Fiona (Eric and Liza’s children) and the rest of their families. Eric had another opportunity to push Elliott in the jog stroller for a mile or so, which was pure magic for our spirits. It was this very action that helped to ignite the Run Across Alabama. Eric has said that many times when Elliott is fussy, that he will put him in the jog stroller and go out for a run and this has a calming effect. Though Elliott will never be able to say the words, I am sure that he loves the time they spend together.

In the next few miles, Eric was developing some strength again and together with Joey and Linda, they began to run at a very slow pace. I joined in sporadically for a mile here and there, but could not maintain any consistency with the pain in my legs from the pounding on Alabama roads over the previous few days. We began to cut off portions of the course that took us onto side roads and ran more of the main highway, which provided a direct route to the state line. We were no longer concerned with hitting exactly 183 miles, but just with getting to the border and completing our Run Across Alabama.

We continued to alternate walking and running until around mile 21. We finally had hit a little groove and were running steady, albeit at a 12-13 minute pace and with pain in each step. Expansion of Highway 24 from two to four lanes meant that there was half of the roadway still under construction and provided a soft gravel bed. This was much preferred over the hard blacktop and concrete of the last 176 miles.

Along the way, I had been carrying my phone so that I could send Twitter status updates to the http://www.runacrossalabama.com website. My phone was also acting as our GPS to provide our real time position to a map on the website for people to track our progress. I also had some music on the memory card that I downloaded each night before running, meant to help us when we needed motivation. Over the previous three days I had played a few songs for Jon and Eric; songs that had specific meaning to our trip, including 'Fortunate Son', 'Staying Alive' and 'Tubthumping' by Chumbawumba. At the top of a hill in which we had run every step on the way up, Eric asked me to play 'Tubthumping.' This song had several meanings, including references to the number of times that Jon had to use the bathroom during the night, after his unfortunate dehydration issue on Day 1, and also featured lyrics that read, 'I get knocked down and I get up again.'

I turned this song on and it was as if something came over us. The crescendo of the song builds up slowly and as it did, our pace began to pick up. Once the song was in full swing, we had started running harder than we had in days. As we made our way down the gravel hill and as the song continued on, Eric and I continually picked up the pace until we were running what seemed like all out. I did not look back, but Joey and Linda had realized what was going on and they backed off a little. We did not speak at all during these few minutes but I am certain that we could read each other’s minds. The lyrics were so perfect for our situation; we had been knocked down, numerous times and somehow we did not let it get us down. We had gotten back up and were staring adversity directly in the face and would not let it beat us.

As the song faded, I changed it to the next song. This time it was U2, 'Where the Streets Have No Name.' Our stride length had increased and we were now running at top speed as Bono belted out the lyrics; ‘I wanna run, I want to hide. I want to tear down the walls that hold me inside.’ My phone was reading 'low battery' but I have to believe that some higher power continued to fuel it, which helped to pace us along. Running just off my shoulder was a dog that we picked up at the top of the hill. He continued to run with us as the distance between us and his home grew steadily.

We passed up aid the first time and the second time we tossed our bottles to Liza's dad, only to pick them up a mile later. I think that I grabbed Joey's bottle, but I knew that he wouldn't care and neither did I. Eric and I were running our hearts out and we could not afford to stop. My legs had become completely numb. The lactic acid had built up and I could not tell if it was the adrenaline flowing or the acid, but I had cold shivers up and down my legs. Two guys, who could barely walk a few hours earlier, were now running like the wind and were immune to the pain. I can't even begin to explain how we were making it happen, nor do I even want to.

After 20 minutes of running at a stifling pace, Eric did start to fade slightly. I ran in front of him by a few meters for another 10 minutes, but when it looked like he was going to start walking, I told him to 'dig deep' and that Elliott was waiting for us at the end. This energized him again and he pulled even as we made our way toward Red Bay.

When we entered the city limits, our pace had slowed slightly but we were still running hard. I have to believe that it was more than just training and hard work that gave us the ability to do what we were doing. We had each logged week’s worth of miles in the previous few days and should have been walking or crawling and not running along like we had just started. It was only two or so miles from this point to the city limits and less than a mile to the rest of the pack who had been waiting for us ahead, so we could finish together.

Running alone with Eric for the better part of 45 minutes is something that I will never forget. Still, it was the last mile that stands out in my mind even more so. As we navigated through the small town, the others had started running back toward us. Eventually we were joined by Dink Taylor, Blake Thompson, David Coon, John Nevels and Jon Elmore, who had been waiting patiently in Red Bay for our arrival. This also reunited the core team of Eric, Eric and Jon. The jubilation of the final mile was almost too much to handle as the three of us were overwhelmed with emotion. I told Eric that it was my honor to share in the pain of the last four days and in this experience with him. Jon mentioned that there was no place that he would rather be. Eric put his hand on my shoulder for a few seconds, as he had done two days earlier when I was sitting in the crew vehicle and temporarily sidelined with pain, but this time, it was to convey his thanks.

Together the three of us ran side by side toward the finish. The rest of the group had backed off just a few steps to allow for us to come through first. What had started 4 days earlier and 183 miles away, had come to a ceremonious finish as we crossed over the change in pavement on the road and stepped into Mississippi. We were cheered on by all of our family and friends and given a near hero's welcome of applause and encouraging signs.

I will say without a doubt that it was nothing short of a miracle that allowed us to run like gazelles again in that last 10k and leave our pain and agony behind us. Then it was a gift from our friends that allowed the three of us to finish together. The emotion of the moment overtook most of us but when it was combined with glory of our efforts, it put smiles on our faces. This proves to me that there is no such thing as "can't". We each had heart and the will to take step after step and the drive to finish. We proved that nothing is impossible. Unknowingly, we became inspiration for others through our effort, even though we were just out to raise awareness for Elliott and the illness that he faces.

The pain that I had during the first days will quickly fade, but I will forever remember the last hour on that 4th of July. I will never forget the kind people who took me by the hand and with tears in their eyes, thanked me for what I was doing for the Schotz family. I will never forget the sacrifices made by our friends, families and our crew that supported us along the way. I will never forget the joy in Eric's eyes when he got to push Elliott in the jog stroller. I will never forget the dozens of people waiting for us at the finish with signs and cheers. I will never forget how through something as simple as running, we brought hope to other people’s lives. I will never forget taking that first step into Mississippi with my good friends all in honor of Elliot Schotz.

There are too many people to mention, that made all of this possible, but I'd like to name a few. Eric's mom Louise was a great crew all 4 days and my wife Laura provided tremendous pre-run coordination and crew support as well. Kelly Elmore coordinated several meals for us and Madelyn and Chip Patton had dinner for us at Elliott Branch Campground on Friday night. Dink and Suzanne Taylor from Fleet Feet were generous shirt sponsors and Rusty Nevels made a great complement to our crew for the last two days. The Fagerman's and the 3M team helped to pace us on days 2 and 3. We were also joined on the run by Dink, Blake Thomson, Paige Dorr, David and Heather Coon, Megan Morris and Glen King.

And by the way, the dog that ran with us was named Buddy. We gave him a ride back home after the run when we showed up at McDonalds with us. We found his rightful owner and he thanked us for the ride!

Finished!!!

2009-07-04T18:58:00.000-07:00

105 miles down, 78 to go

2009-07-02T17:30:00.000-07:00

Feels great to be over halfway done. i really got a boost when I saw Liza, Fiona, and Elliott on Tabernacle road 1 mile from the finish. It was so special to be able to push Elli and hold him.

My body seems to be holding up well. Lots of sore muscles but I expected that. My quadriceps are the worst. We will push on tomorrow for our last big day. I've found that once I get moving ,things are much easier. The initial "getting moving" is the hard part. If I can get up tomorrow, and start running decently , russellville will be in each.

The heat wasn't a big factor until the last couple hours. We had clouds and a nice breeze for most of the day. At the end when the sun started to beat down, the aid stops got more frequent; the cold sponges and cold water hit the spot.

We've had awesome support from friends, family, co-workers, passersby, people on their front porches, etc... I'm sure it will continue tomorrow.

Day 2 of RAA

2009-07-02T13:47:00.000-07:00

I had the great pleasure of participating in a large part of today's event. The Army used to have a saying, "We do more before 9am than most folks do all day". After seeing today's event, I'd say these guys did more before 9am than the Army typically does all day.

After learning that last night Jon Elmore had to be sent to the hospital for dehydration, I was doubtful that he'd be running today. Today began a little before 4am with the runners loading the chase van and preparing to begin. Guess what! Jon was out there in his running gear and said he felt fine. He said he was given about a gallon of fluid and was now fully hydrated as indicated by the number of times he had to pee during the night. I got the pleasure of meeting Eric's Mom. She's a very nice lady and there is no denying that she's Eric's mom. The resemblance is striking and many of her mannerisms match those I've seen in Eric. She drove us to the point where they ended yesterday.

It was 4am, pitch dark and the runners were insisting on starting from the exact point that they were picked up yesterday. After a quick photo in front of the State Park sign, the run began. I wasn't prepared for the darkness. It was really dark. Fortunately Eric Charette had a headlamp that illuminated the path ahead for all of us. He even played a game of "Name that tune" when he put his mp3 on speaker and played a few bars of "One Headlight" by the Wallflowers. After about a mile, there was the steepest, curviest hill I think I have ever seen. We were 4 guys in the dark on a very curvy two lane road going uphill and the road had virtually no shoulder to get on when cars came through. There were numerous dents I noticed on the guardrail and I realized that we were only being protected by the Eric's headlamp and 3M Scotchlite sheeting that was adhered to reflective vests. What I thought surely would be almost no traffic turned out to be pretty busy at 4am. We were warned about chicken trucks that come through the area and but we didn't see any yet.

I normally don't have a sharp sense of smell but on this day, my sense was heightened. I smelled plants and flowers as we came across the mountain. On about mile 3 we could see the Lake Guntersville and the smell of dead fish replaced the fragrant plants. This was followed by what appeared to be the remains of an armadillo in the darkness. As the sun was fully up the memory of the previous smells were followed by the aroma of the "chicken plant" so it was called. It smelled like dry dog food. Finally just before getting into the more populated area of Guntersville, we met the infamous chicken truck in all its glory. You know the smell.

After a few turns and over and down another hill, I stopped off at mile #8 for the day and my leg of the run was complete.

I was replaced by Russ Morlando. For those that may not know, the 3M folks are doing days 2 and 3 as a relay. Russ left with the group and I was taken back to my vehicle at the Guntersville Lodge. After a quick shower, I returned and met the group at the end of Russ' leg. Rebecca Morlando relieved Russ. She had signed up to bike alongside the runners for about 16 miles. I joined her and for a long way, one of us would be in front of the runners and the other would trail. This leg began at the same hospital in which Jon Elmore spent some time the evening before. There were some jokes if any of the nurses that treated him would be getting off work about that time and see him running.

After getting onto a smaller two lane road, the traffic didn't really seem to subside. It wasn't until we passed Arab that the traffic reduced at all. Eric Charette had been battling nausea for a good portion of the morning and he took about a 10 minute break in the chase car.

He rejoined the group and appeared to be going strong again. Eric Schotz was using the massage stick on his own legs and Jon was going strong. As the day progressed it seemed like the aid stops were more frequent as they should be. The runners were not consuming much food, although there were some peanut butter and jelly sandwiches available. Mostly the runners were doing gel packs, gatorade and water.

There were numerous encounters with unleashed dogs, cows with a "confused" look on their faces, and one photo taken with a couple of horses.

Some where along they way, we picked up some additional runners. Larry Dickerson from 3M and two of his friends provided a nice injection of energy to the team. It was almost comical to hear the amount of chatter that was going on when they arrived. Finally at about the 30 mile mark for the day, I called it quits and was taken back to my vehicle. Rebecca finished when I did with Larry carrying the 3M torch for several miles. Sooi Ooi from 3M joined the team and relieved Larry. Sooi ran about 10 miles and was relieved by Britt Murphy. Britt anchored the 3M relay group.

After I finished today, I wasn't able to make it back to the finish line in Hartselle but I'm told that there was a pretty large group welcoming them. Several runners joined in for the finish and Eric was able to push Elliott in his jogging stroller for the final mile.

Afterwards the runners hit the pool. They have a meal at a local church planned for the evening and I think they are all looking forward to a leg massage that is on the agenda for them.

Sweet encouragement from Elliott's cousins

2009-06-29T17:48:00.001-07:00

These drawings came in the mail today from Elliott's Alabama cousins, Sara and Emily. Thanks Girls!! See you Wednesday! Love you!

Weather Forecast

2009-06-25T18:59:00.001-07:00

2009-06-21T14:34:00.000-07:00

Elliott was telling me a great story yesterday. If you've missed any of his other videos. Checkout the older posts in April (see Blog Archive).

Hot Weather Running

2009-06-20T14:51:00.000-07:00

I took a test run late yesterday afternoon to get a gauge on how much fluid I need to take in during the RAA. When I left home, it was 95F and sunny. Hopefully that will be the most extreme weather we'll have to deal with in 10 days. After a 10 minute warmup, I weighed myself and then went out for a hour. I tried to avoid shade as best I could. I hopped on the scale right when I returned. 5 lbs lost. More than I expected. In other hot weather races (mid 80's), I've drank at least 40 fluid oz. per hour. Yesterday, I would have needed to do almost double that(over a half gallon per hour) to keep from getting dehydrated. Our plan is to start at 4am each day so we'll avoid the scorching heat most of the time.

I ran 24.5 miles today with Jon and ate really well - 3 bottles of Gatorade, 2 bottles of water, Snickers dark bar, and a 5 pack of powdered sugar mini donuts. Our post run treat was my favorite - Large chocolate milkshake from McDonalds.

Elliott and Fiona

2009-06-20T14:11:00.000-07:00

This summer, Fiona has really taken to reading. The touch and feel book in the picture is one of Elliott's favorites. Fiona grabs his hand and rubs it on the textures on each page.

They have developed quite a touching bond.

A Runners Determination, Stamina and Focus. A Father's Cause

2009-06-20T06:32:00.001-07:00

I was honored when Eric asked me to be to be a guest blogger on this site. This is a first for me and I hope I can provide some meaningful contributions. For those that may not know me, I work with Eric at 3M and I am a recreational runner...not in the same league with Eric. In fact, I envy Eric's ability. I have gained an immense appreciation for his determination, stamina and focus.

I'd like to give a little background on my knowledge of how the RAA came to fruition. Several of the runners at 3M have participated in 5K's, 10K's, 1/2 marathons, sprint triathlons and even marathons for a few of the runners. Although we haven't done it lately, the group used to schedule Saturday morning runs. I recall a couple of year's ago running from the area just North of the River Bridge in Decatur to Mooresville. I somehow took a wrong road and turned what was supposed to be 10 miles into more like a 13 mile run. In addition, I was stupid that day and didn't bring water. Needless to say, I was happy to be finished. I look back on that now as an enjoyable experience as time makes the memory of pain fade. Many of us in the 3M running club often talk about doing something big; a full triathon, an ultra run, etc. For most of us, it is just talk that will never materialize. Eric particpates in these coversations as well, but we all know that when Eric talks about doing something big, we can fully expect him to follow through. I remember in one of these coversations him mentioning the idea of running across Alabama. This was before Elliott's diagnosis and although Eric had no cause to do the run at the time, nobody doubted that he'd do it at some point.

I recall last year 3M was hosting the Austin High School Trail Trials in our park. The park at 3M is a great running spot filled with challenging hills and shaded trails. Eric was the event director and was handling the coordination of this while in the midst of a family crisis. The past few days they had taken Elliott to more doctors than you can count on one hand and had other visits scheduled. I remember Eric stating that the doctors were having a hard time determining what Elliott's condition was. On the day of the event, several 3Mer's offered to cover for Eric and manage the event. Eric said they had no doctor's appointments that day and this event was a good way to occupy his mind and he preferred to be there. A few days later they got the difinitive diagnosis. I recall Eric telling some of us that Elliott had Tay Sachs. Although I had heard of it, and I had heard that it was a likely possibility for Elliott to have, I didn't really know anything about it. Eric bravely shared some background about Tay Sachs with us. He shared the prognosis and although everyone could tell it was difficult for him, he managed to somehow keep upbeat. I remember him saying that he took comfort in knowing that Elliott would never know he was declining. He said that they plan to do everything they can to enjoy him.

With the RAA event now rapidly approaching, I recently asked Eric how the whole thing got started. Eric said that when they learned about Elliott's diagnosis, they had dinner with Jon Elmore's family and shared the news with them. Apparently Eric had previously shared his idea of running across Alabama with Jon. Before that night ended, the RAA for Elliott was born. At that point Eric was able to connect a goal he wanted to achieve with a cause for his son. Since that time, countless hours of training, planning and promoting has transpired.

As the event approaches, Eric runs. He runs at least 10 miles to work. He runs at lunch. He runs home...often times taking an indirect route. He has battled through some injuries that would have surely sidelined others. He tortures himself with deep tissue massages and ice baths. His pain threshold is high. When asked how he's feeling, he always answers cheerfully, "Feeling Good!". Recently a coworker told me that he was awakened one morning at around 3am by barking dogs. He goes outside to see what they are barking at and it is just Eric across the street at Oak Park Middle School running the track. Wednesday of this week at 5pm I was sitting in a conference room at 3M that had a view of 3M's entrance. I happened to glance out the window and saw Eric leaving for the day...running. It was 97 degrees.

I said it once but I'll say it again. I have gained an immense appreciation for his determination, stamina and focus. For Eric the runner, these traits are innate. For Eric the father of Elliott, these traits are magnified.

2009-06-10T18:23:00.000-07:00

I am Eric's mother and live 900 miles away from him and his family. I wish we were closer. As Liza said in her last post, "Feel free to ask any questions you have because Elliott is always in the front of our consciousness". One of the things Elliott is teaching me is how important it is to address what is going on in people's lives. I used to try to cheer people up if I knew they were going through a tough situation. I understand better now the importance of taking time to talk and to listen and not ignore 'the elephant in the room'.

I try to go to Alabama about every six weeks to spend a week with Eric, Eliza, Fiona and Elliott. My husband, Herb, comes with sometimes, but usually stays home to keep things going there. On these trips I get to spend time with Elliott and learn about his life. He still is able to smile often and he really enjoys kicking his legs and making his infant seat bounce. It is so good to see him laugh! He is also very cuddly. Fiona and I enjoy doing art projects together and playing games. Liza and I get involved in projects and have fun learning from each other. I love to talk with her. On my last trip Eric and I spent a day together driving the 'second day's route' for the Run Across Alabama. It was a very special day for me.

I will be going to their house in less than two weeks and am so looking forward to it. In the week before the run we will spend a time together doing all the regular things that happen during a week at the Schotz home - walking Hank, laundry, meals, reading to Fiona, helping with Elliott, holding Elliott, talking.

Eric asked me to drive the support car for Jon, Eric C and him in the run. I was really pleased. Doing this will be something really special for me because I will be helping Eric and his friends through the run and because the benefits of the run will be a great tribute to Elliott. Eric said they would like to see me every half hour. It will take me a while to figure out a pattern of how far to drive ahead and what to do. I depend on them to train me. We will have a couple coolers along with food and drink. I'm a bit concerned about smelly shoes, etc. Perhaps technology and the wonders of modern chemistry have a solution to that I have yet to learn.

Eric's Blog 6/7 - Parkview Baptist VBS

2009-06-07T12:34:00.000-07:00

About a week ago, a running friend of mine, Paige, gave me a heads up that the vacation bible school (VBS) at her church, Parkview Baptist, was planning a fundraiser for the Run Across Alabama and Tay-Sachs research. On Friday, Liza, Elliott, Fiona, and I had the privilege to come to the final 30 minutes of VBS at Parkview. We were welcomed by the staff, volunteers, Paige, and especially Christopher Sykes who directs the pre-school and children's ministry. After a final singing of the Australian VBS theme song, Chris honored us by inviting us to the front where we stood before the 180 children, staff, and parents. We could hear several young voices whisper "There is Elliott!!" as we walked up as they had undoubtably got to know about Elliott and Tay-Sachs throughout the week. To cheers , Chris announced that the kids had raised over eight hundred dollars during the week for NTSAD. After a touching prayer, we bid our thanks and goodbyes.

Thank you Chris, Paige, and Parkview Baptist for such a showing of support and love!!

This sets a nice high bar for our churches youth group (Westminster Presbyterian) who also are raising funds for Tay-Sachs as part of their summer mission.

My training has gone well the last couple weeks. Apart from 3-4 days where I was slowed by a nasty and painful stomach bug, I've put in good mileage and with each step get closer to the starting line outside of Mentone. The past four days runs were 10, 11, 15, and 18 miles.

The pictures to the left and below were taken during Elliott's bath yesterday.

Nice Smile!

Liza's Blog

2009-06-01T17:33:00.000-07:00

Many of you have asked if/ how much Elliott's abilities have diminished and what symptoms Elliott is showing. So, I'll see if I can write a concise synopsis of his current state:

Physically, he functions as an infant. He has no neck control and his hand and foot movements are very elementary (i.e. he can't hold a bottle, or grab anything). His favorite activity is having a helium balloon tied to his wrist or ankle and then moving his extremities to get the balloon to move. He also enjoys sitting in his infant bouncy seat and kicking his legs to get himself bouncing. Both of these are activities that he sees the cause and effect of his own movements.

He has a feeding tube now. We had a Mic Key button put in in February. It is a small port located above his navel and to his right side that goes straight into his stomach. He still "eats" orally during the day but we use the button for medicine dosing and nighttime feedings. The daytime feedings are primarily Pediasure which has all of the vitamins/minerals a kid needs. I also give him a finely pureed baby food, combined with Pediasure and some sweetened condensed milk twice a day. He drinks this through a sippy cup. I recently started this after a couple of doctors expressed concern at his stall in weight gain...He is at a very healthy weight -27 lbs.) but hasn't gained since February. So, hopefully, this will resolve that concern. While having the feeding port placed, he also had the top portion of his stomach narrowed to stop reflux (called a fundiplication). The reflux had gotten to the point that he was very uncomfortable (even on meds.) and was throwing up every night in his sleep. This had been a wonderful improvement for him.

His eyesight certainly has dimished but he seems to see shadows, lights, and close up. His hearing is good and so he often fools people by following them with his eyes when really he is following their voice.

According to the EEG he has not had any seizures. I notice that sometimes he seems sort of absent/dazed. During these spells he doesn't respond to my voice or touch, stares, and his body seems stiff. I thought that these were seizures but I'm not really sure. I stay with him and after 20 seconds he seems to "come back." He doesn't seem to be in any pain and I have decided that unless these spells change or become more severe, I am not going to worry about them.

Fiona is completely crazy about Elliott and meets him at his level. She doesn't know of the severity of his disease but knows that he will not function as we do, he is losing his eyesight, and eventually he will only "eat" through his tube. He responds to her voice, her touch, and her energy level which wonderful to watch.

A a mother, this is my greatest concern; How Elliott's life and death will effect Fiona. It is one of the hardest parts of Elliott's disease, if not the hardest for me. She has been remarkable thus far and, so, I trust that she will continue to amaze and teach me with her acceptance and unconditional love for her brother.

Eric and I are very willing to answer questions about Elliott , his disease or our family's experience with it. If you have a question or want to know how we are, please don't hesitate to ask. There really isn't a time that it isn't on our minds and we appreciate people's concern.

Elliott, Fiona, and Sara in the iMAC photo booth

2009-05-26T18:43:00.001-07:00

Eric's Blog 5/26

2009-05-26T18:07:00.000-07:00

My training slowed down the past three weeks as I gave my achilles and calf some time to heal. Luckily I didn't have full blown achilles tendonitis (just sore). It was a deep calf strain.

The picture at right are a couple of rehab tools that have helped me through. The massage stick ("The Stick") is very effective. Not a substitute for my chiro friend B.J. ,who would work on my calves for half the therapy session, but in my opinion if a massage hurts its a good massage. The stick makes a good hurt.

The black sock-like things on my calves are Zensah calf sleeves. The have elastic below the knees and above the angles and do a great job with compression. They feel great. There is a scientific explanation for why they help with recovery and healing but I've turned my chemical engineering brain off and just have confidence they are getting me back on the road faster and with less pain.

In addition to all this, I did quite a bit of icing post-injury, kept the legs elevated, and took several days off. The classic R.I.C.E. (Rest , ice, compression, elevation) therapy is hard to beat.

I'm very optimistic again about the run and have time to get some key workouts in before July 1st. I'm waiting for a weekend day in the high 80's when I'm going to leave home at noon for a long run. I have a good history in running in the heat but my body and mind needs to get a reminder and some acclimitization. Add in a few more early morning 30 - 40 milers and the finish line (pic below) will start pulling me toward it.

Life at the Beach- Eric's Blog 5/17

2009-05-17T18:21:00.000-07:00

Our family had our annual pilgrimage to the beach the first week in May. We do the beach very low key and had a nice time. This post will be heavy on the pictures, lite on the prose.

Liza cannot get enough of the beach. It's her idea of paradise.

Cousin Sara getting a giggle out of Elliott. It was awesome to see them interact.

With G-PA

Nice breeze. Nice chair. Nice Nap.

Liza's Blog

2009-05-15T18:03:00.000-07:00

In a society that often places one's value on money and possessions, motherhood often gets overlooked as a "profitable job". It doesn't earn consumables, it usually involves spending much of life in in a minivan/SUV full of empty, moldy sippy cups and stinky unmatched socks; Overall being a full time Mom doesn't contain much clout.
Since becoming a mother six years ago, I have been humbled by interactions with my children more times than I care to admit. I usually am able to laugh at these times... a couple of days after they happen.
Elliott served up a doozy of humble pie this week at the dental office! While Fiona was having her teeth cleaned and gagging her way through, Elliott drank his bottle in my lap. After he finished his bottle, he began to fuss. So, as I do much of the time, I stood up, cradled him and he quieted. Then he proceeded to toot LOUDLY several times and filled the room with horrific odors. LOVELY! With my first child I would have been embarrassed but I apologized for Elliott's faux pas and tried to ignore the stench. I was pleased to learn that Fiona didn't have any cavities and even happier that Fiona did not remark on the cloud of stink that Elliott had bestowed upon the room.
So, we ventured up to the front desk where they said that we were all set to go. I was holding the front door open for Fiona to walk out and I notice that there is poop on my hand and running down Elliott's leg. Looking back, I saw that we had left a path of poop along the hallway and up to the front desk and then unknowingly, I had stepped in it and tracked it too! The hygenist seeing my horror said "Go ahead honey, I'll take care of it." Since the bathroom was readily available, we went in and ended up stripping Elliott down, bagging up my shoes, his outfit, the inadequate diaper and copious wipes. My outfit was not to be revived in any dental office bathroom- it was all over me! So, after quite awhile, Fiona, Elliott and I emerged from the bathroom; Elliott, naked except for his diaper, me, barefoot with plastic bags ripped open and stuck to the poop down the front of my outfit (so as not to get it all over Elliott when I held him) and finally, Fiona holding several plastic bags at arms length from her body. I walked back into the dental office and apologized profusely. Needless to say we rode home with the windows down!
So, today, the only "must" on my to do list was to take a peace offering to the dental office: a platter of cookies, brownies and fresh strawberries. A friend suggested I just change dental offices; But after some deliberation, I decided that I love being a mom and why not try to dignify the job description!? Motherhood is not glamorous, it doesn't take me to new places, it isn't always intellectually stimulating, but somehow I enjoy it. It provides me with many laughs and I am defining the value of being a mom in my own mind.

Eric's Update: 5/5

2009-05-05T13:57:00.000-07:00

One of the hardest parts of Elliott's disease has been looking at him and thinking off all the things he will never get a chance to experience or do. His first spoken words occured only in a poignant dream of mine. He looked at Liza and said clearly "I love you mommy". He'll never actually be able to speak those words but we know they are true. A couple times this week during a run, my mind shifted to thinking about Elliott. On Saturday, I had the clearest image of a young Elliott holding my hand walking across our lawn- something that will never happen. I immediately teared up and got a hard lump in my throat. In no time, I was openly weeping as a ran down a quiet country road. It was a bit of a struggle to concentrate on where I was- luckily it wasn't a busy road. It just amazes me at the emotions that dwell just below the surface. When they surface, I try my best to validate them and definitely don't think of this as a weak moment. It is what it is and there is no way around that things are going to be difficult at times. As Liza wrote, the blessing is that Elliott is completely unaware of what he is missing and is completely innocent and peaceful.

I'd been wondering when my training for the run across Alabama would get hard. Up until this week, its actually been a lot of fun. My favorite part of running is to head out for a long run at an easy pace and that's all I had been doing. As I gradually increased my mileage, I was thinking that at some point my legs would start to complain a little and this week was the time for that. On Thursday, I ran 16 miles into work and then returned home via my 10 mile route. At mile 24 of my 26 mile day, my achilles and lower calf started to tighten up and throb. I stretched a little and then pushed it home. On Saturday, the pain returned at mile 13 of a 18 mile run. The pain was bearable and I doubt anyone could notice that I was modifying my stride to minimize toe-off in favor of leg lift. Monday, I pushed Elliott 10 miles on the jogging path at the beach and after a few miles the pain resurfaced more intensely. To some extent, I welcome a little pain to get prepare my mind for the long effort that will be required for the RAA as there is no way I will get through that without a little suffering. Since this is an achilles tendon injury (something I haven't worked through before), I'm going to err on the side of caution and take at least a few days to heal up. I'd much rather be 100% healthy and injury free on July 1 versus being at 100% fitness. As I write this, I have a ziploc full of ice strapped to my lower calf. I fell asleep last night with the same getup.

Eric

Liza's blog

2009-05-04T18:19:00.000-07:00

OK...So, I'm new to this whole blog thing...I don't really even know where to begin with my thoughts, feelings, etc. It's not that my life is absent from these things, in fact, there is such a plethora of them that I am overwhelmed much of the time. Nonetheless, I have chosen to begin with the letter that I sent out to our friends and family the weekend that we found out that Elliott had Tay Sachs. It sums up the route that Eric and I have chosen in the months since we found out of Elliott's disease.

In the days to come, I will continue on my adventure as a mother, sharing some thoughts, laughs, sadness, and I 'm sure other stuff that life throws my way. We have been so blessed by people reaching out to us since Elliott's diagnosis and this is may way of "paying it forward."

Tuesday, September 16, 2008 10:49 AM

Subject: Elliott Schotz

Hi, All!

As many of you know, Elliott has been going through many tests and observed by many doctors overs the past 3 weeks. His primary pediatrician saw a marker on his retina indicating a possible genetic disease at his 9 month check-up which triggered these tests.

Elliott has been diagnosed with Tay Sachs disease. It is a genetic disease which Eric and I both have a recessive gene for. It is extremely rare. Sadly, there is no cure for this disease. Elliott's abilities will begin to diminish around 12 months and he will begin to have seizures. The disease will gradually degenerate his brain and his life expectancy is 4-5 years. We are grateful that Elliott will not know of his degeneration. Eric and I find peace in that! Fiona does not have the disease, but will have to be tested for the recessive gene in the case she chooses to have children in the future. She simply knows that Elliott's body is special and will function in a different way than ours. We will begin to educate her soon, but want to do it in a manner that is appropriate for her age and emotional capabilities.

We have been to many wonderful doctors over the past 3 weeks and are extremely pleased and impressed with the care that we have received thus far. We are working with a Geneticist at the University of Alabama in B'ham to ensure that the members of our family are tested, therefore, preventing this disease from reoccuring in our future generations.

We are so appreciative for the prayers, expressions of love and thoughts that have been sent our way. They are carrying us at this time. We have found new meaning in "living for today" with Elliott. He is a happy, content, chunky little boy today and we are grateful for that. Please continue to keep our family in your prayers as we navigate this new chapter in the life of our family.

Eric's Update 4/25

2009-04-25T14:26:00.000-07:00

Had a good week of training- 76 miles. Got in 29 miles on Wednesday with a morning run to work with Wayne, a lunch run, and a commute home. Today, I ran part of the course with Jon- Hartselle to Moulton- 22 miles. Went well- finished in 3 hrs 15 minutes. This will be the starting section of Day 3. Once to Moulton, we will continue on to Russellville. Day 3 is an easier stretch than Day 1 and Day 2, at least on paper. Once we have 100+ miles on our legs, any "easy" running might be a dream.

Video is from today. My Mom (Elliott's grandma) got a little show while she was reading a book. Elliott loves kicking and bouncing. He gets so much joy out of it we will hate it if he out grows it. My cousin Dean is going to try to fabricate a big boy sized bouncy chair. We are going to try and find a another smaller one and send to him as a template. If anyone has a spare, let us know!

Eric's Update-4/18

2009-04-18T17:24:00.000-07:00

Picture is of Elliott and his adoring sister, Fiona. Fiona just turned six two days ago and had a fun party today at Chuck-E-Cheese

We took Elliott to church on Easter for the first time since he was baptized in November. With all the cold and flu stuff going around, we didn't want to risk things since he is hit pretty hard by a cold. He made it through the service in my arms in grand style- he started giggling during the sermon which was fun and special. We all stop everything when he gets in his funny moods just to cherish the moment. I hope his last laugh is a long ways off but that thought is always in the back of my mind.

Elliott has got to the point now that eating baby food is difficult. He had worked up to #3 (chunky) baby food but he stopped back to #2 (thick,smooth). Now its strictly Pediasure by bottle and by pump at night. He really enjoys drinking from a bottle and does well at it. We'll continue that as long as we can.

Training continues to go well. Had a 69 mile week. Ran five days with three of them 18 miles or more. I'm not trying to run fast- there really isn't a point. Slow and steady endurance is all I'll need.

I called this post "Eric's update" because pretty soon Liza is going to be sharing some of her thoughts and day to day experiences on the blog too.

Elliott at 3 weeks old. He used to love that thumb .

Elliott feeling great

2009-04-05T04:28:00.000-07:00

Elliott had a great day yesterday. Loving some of his favorite things - bouncy seat and shiny mylar balloons. Its so awesome when he gets laughing and giggly like this. On the running front, I had a good week of training (64 miles).
Two big days (23 and 19 miles). Came through them with little soreness the day
after which is a positive. Next week I'll run to work and back two days
in a row (9.5 miles each way) for a total of 38 in 2 days.

Training has begun

2009-03-28T17:29:00.000-07:00

Last week, I officially started my training for the run. I put in two weeks of "normal" marathon training (54 and 58 miles) to establish a good endurance base. I don't plan on doing more than 100 miles/week training but I'll get close. Keys will be a couple back-to-back long runs.

Drove down to Hartselle today to tweak the course a bit. Found what I think is a shorter and better way of entering town. It is closer to hotels and best of all finishes at the Dairy Queen. My favorite post-run reward is a chocolate milkshake. The runs in July will warrant a milkshake and a chocolate sundae for sure.