An international team merged together in an collaborative effort to create a new way for artists to create art using only their eyes, and they succeeded by creating a very low cost solution that you can build yourself for less than $50 with free software and detailed video instructions.
The invention has been a lifesaver for artist Tony Quan, aka Tempt One, a legendary LA graffity writer, publisher and activist. He is now creating art again, something he has not been able to do ever since ALS left him completely paralyzed except for his eye movement.
“Art is a tool of empowerment and social change, and I consider myself blessed to be able to create and use my work to promote health reform, bring awareness about ALS and help others.”
The team has taken a projection device out into downtown Los angeles to display Quan’s art live as he drew it in his hospital room. The designs were visible from the freeway as drivers watched the creations take place.
The next step for this international dream team is to connect ALS patients together online to create eye art as well as build a network of software developers, hardware hackers, and urban projection artists.
This project was made possible by Members of Free Art and Technology (FAT), OpenFrameworks, the Graffiti Research Lab, the Ebeling Group communities, the Not Impossible Foundation, with additional support from Parsons Commucations Design & Technology.
My name is Chrystal Wagner. I have a wonderful husband and two beautiful children. Hunter is 4 ½ years old and Caitlin is 2 years old. We have lived in Lehi, Utah for 4 years now. Now to our story-
We had tried for a year to get pregnant with our first. After much frustration we turned to the doctor to do some fertility testing. Meanwhile we decided to start the adoption process just in case. Everything showed up fine with me but my husband ended up having a problem that only needed surgery to fix. Within six months I was finally pregnant and we were elated. My pregnancy went well and I was very healthy. I went all the way to my due date before going into labor. This is where the story starts to take a turn. I was in labor for something like 36 hours all said and done. When my contractions got close together we went to the hospital. Unfortunately I was not progressing. They kept sending me home and telling me to try and relax. Finally the following evening my husband called and said he was bringing me to the hospital and that they better admit me. After about 15 hours of labor, I was only dialated to a 2 ½. I wasn’t progressing but my contractions were really bad (all back labor). To sum it all up, I should have had a C-Section. I ended up on an epideral all night and had problems with my blood pressure which in turn put my son in distress. He was finally born the next morning. The doctor used forceps to pull him into the birth canal, but then I delivered him the rest of the way. He was too big for me and I ended up with 4th degree tearing. Not a fun first time experience!! He weighed in at 7lbs. 13oz. and was 20 ¼ inches long. He had a full head of hair and was just beautiful. He had some minor breathing issues at first so they took him to the NICU. I was able to go and get him from the NICU hours later.
Hunter did fine all day other than having a really high pitched cry. We were definitely not ready for what was about to unfold. Later on in the day they took Hunter to get his first bath. My husband went with to take pictures. As they were bathing him my husband noticed that his eyes were jumping (nystagmus), and he became alarmed. He told the nurse that it didn’t look normal and before he knew it the NICU team was there taking my sweet baby away again. They did an ultrasound that night and found grey spots on his brain. They told us they weren’t sure, but that they thought it might be cancer. We were devastated. The next day they ran a CT Scan and found a Occipital Lobe Fracture (from the forceps). This had caused residual bleeding and they thought that the swelling could be why his eyes were jumping. Hunter was in the NICU for the next 5 days. Other than the fracture we thought everything was fine. Once we got him home we learned differently. We had him home a little over a week when he started displaying seizure-like episodes. We called the pediatrician and he said to bring him right down. The doctor was able to see what we were talking about and immediately sent us to the PICU. Hunter had an EEG ran and an MRI. The EEG came back normal and the MRI showed residual bleeding on the front of his brain (forehead). At this point they still thought it was all from the fracture. Hunter’s problems continued and after a 24 hour EEG and other tests we still didn’t have any answers. We decided to head to Utah and see someone at Primary Children’s Medical Center. We showed them video of Hunter’s episodes and they had no idea what it was. At 5 months old, Hunter was diagnosed with Laryngomalasia which he needed surgery for. About a month later we noticed Hunter not using his right arm. We got very worried and immediately called the neurologist. We traveled once again to Salt Lake City for another visit. Dr. Lloyd (our neurologist) consulted with Dr. Swaboda about all of Hunter’s symptoms. After putting everything together they came to a diagnosis. Hunter had Alternating Hemiplegia of Childhood. We were fortunate that Dr. Swaboda was the one consulted about our son because she is actually the expert and one of the only neurologists researching Alternating Hemiplegia of Childhood. Hunter was 8 months old when diagnosed. What a blessing to be diagnosed as early as he was!
16 months old
It was such a relief to finally have a diagnosis. I now had a direction to go in to helping my son. AHC (Alternating Hemiplegia of Childhood) is a very rare disease (1 in 1 million) and the cause is unknown. There are less than 250 worldwide cases. There are a wide range of symptoms with this disease. Most of the kids with AHC display seizure-like episodes early on that seem to get better as they get older. They are all very sensitive to their environment, i.e. wind, water, cold temperatures, light, loud noises, unfamiliar people/places, and irregular eye movement or nystagmus. Later on the children start to display paralysis symptoms. The paralysis comes and goes and can be one side (meaning 1 arm and leg) or full body (bilateral). Most of the AHC children are very delayed and have speech problems. On the severe end some don’t ever walk or talk. There is also the chance of developing a seizure disorder as they get older.
They started Hunter on Topomax hoping to get the seizure-like episodes under control. We immediately started Early Intervention to help with his delay. He continued to work with therapist through EI until he turned 3 years old. Nine months ago we made the hard decision to finally get Hunter a g-tube. He gradually stopped eating and even fought his bottle. Since then, he has gained 8 pounds and is a lot stronger. We believe that this has had a great deal to do with his current progress. In the last 6 months, Hunter has started getting into and out of sitting by himself, pulling to kneeling, and on occasion he has pulled to standing. He is very active and we are hoping that he will eventually walk. He doesn’t talk (we believe this is something that has to do with the Topomax). He currently gets PT, OT, ST, and Special Needs Preschool all in-home. Hunter is a happy little boy that brings joy to everyone he meets. He loves music and so we watch a lot of Barney, Wiggles, and High School Musical. He also loves sports, football being his absolute favorite. He is very delayed, but we love him just the same. I love his smile-it just lights up a room!! We get comments about his pretty blue eyes all the time.
3 Years Old
So our journey to this point hasn’t gone without its struggles. I just take it day by day, trying to give Hunter everything he needs. My advice to other parents dealing with any kind of diagnosis is to be an aggressive advocate for your child. Don’t let doctors tell you that they are “developmentally delayed” with no diagnosis. I believe that is cop out. Having a special needs child has changed my life. It has made me dig deep down to realize what is really important. Hunter is a HUGE blessing to us. We cherish everyday with him and love him for who he is. My advice for those needing support: reach out to other special needs parents (they always understand what you are going through to some degree). I have also followed a few blogs that always have inspirational things to help me. Above all l would mention that my faith in family and the support and love of others is what has got me to this point.
I met my husband Mike in High School, we were sweethearts from the start. We have three children, all boys and we are currently living in Stansbury Park, Utah.
When I was expecting Tucker, I was very sick for 6 months I couldn’t keep anything down! I kept having feelings like something wasn’t right, that I needed to have him checked. One morning day I woke up early, I had an uneasy feeling , I KNEW something was wrong. As we traveled to the hospital to see my Dr., we were listening to the radio and they played the song “Angels Among Us”. This incredible feeling came over me and I knew that God was speaking to me. I knew He was sending me an angel.
We had an ultrasound done and the Doc said everything looked good. So we went home, but over the next couple of months I continued with the promptings that something wasn’t right. When we went in for a second ultrasound, we found out it was a boy. During that ultrasound, he got really quiet. It is a moment I will never forget!! He went over and over the baby’s head, measuring it. I then asked if there was something wrong with the baby’s head. He said yes there was, that there was a lot of fluid in his ventricles. They told us to go for more tests and an ultrasound. I left the doctor’s office feeling so scared and worried. Realizing this is why I had felt uneasy for so long, that something wasn’t right the whole pregnancy. Mike and I traveled to Utah with my mom waiting for the unknown. We met with a doctor who looked at the ultrasound who asked if anyone had told us what was wrong with our baby. I said we know he had hydrocephalus. He told us that our baby had Spina bifida and told us to meet with a genetic counselor and get an amniocentesis. I was in shock and remember thinking “what is Spina bifida?”
Mike was going through his OB rotation for nursing and so he had a book with a lot of information in it. We sat down and started reading. I went to get some things we needed. When we met back up, I said, “I feel like his name should be Tucker.” Mike said I was just feeling like that also. His name was meant to be Tucker.
We met with the Genetic counselor and she informed us more about what was going to happen. She told us that as soon as he was born they would do surgery to repair the bubble on his back and would place a shunt in his brain to drain the fluid off. She then told us that he would most likely be paralyzed from the waist down. She also said he could be a vegetable and he would have a lot of needs. We listened to this for 3 hours and took it all in, but my emotions were at the verge. I don’t know why but I was trying to be strong… strong for myself, my husband, for my mother and for my unborn child. The counselor then said “you don’t have to hold it all together. This isn’t fair, it is ok to be sad.” I then burst into tears!! I was scared and felt so alone and sad at that point. We then left her office. We stood in the hallway at Primary Children’s Medical Center… my mom, Mike and I holding each other and crying for what seemed like an hour.
We then went to the Jordan River Temple and walked around, sat and talked and cried. Mostly I was just scared wondering what our future held for our first born and for us as his parents. I was seeking for peace and comfort of any kind! We then went to my Aunt’s house where she gave us a place to stay for as long as we needed. I will never forget that night! It was late and we were so drained emotionally, physically, and spiritually. Mike and I got on our knees and prayed for the Lord’s help, it was the most amazing prayer and I felt my Heavenly Fathers arms around me! The feeling that came over us was peace and comfort. We poured our hearts out to Him, telling Him how we didn’t know what we were to do or how it was going to be, but we knew it was His plan and we would do our best to accept whatever was in the future. We then climbed in bed and cried and talked and cried and talked. Mike had fasted all day and the day prior so he was exhausted and he fell asleep.
I lay awake for quite awhile with my heart aching. This was the hardest thing I had ever faced and I wasn’t sure how I was going to do it! Thoughts kept going through my head that I may lose my son. I wanted so badly to just be able to give it to the Lord, but I felt so heavy with sadness, I just wanted our baby to be ok. As I was laying there the words to the song “Angels Among Us” came into my mind and I then had this incredible feeling that I was being sent an Angel. I felt the Lord very near as well as Tucker. I had peace fill my heart and comfort came to me and I was able to go to sleep.
The long two months ahead were hard! I was depressed for like a week and didn’t want to talk to anyone or do anything. I laid on my bed a lot and the couch feeling sorry and asking the Lord “Why?” I remember crying one night while feeling like this, and people had been calling to wish us luck and let us know they were praying for us. I felt so sad inside and was crying when I heard a voice of a little child say, ‘Mom, don’t be sad that I am coming to earth to live with you.” I got chills and it became so clear to me that I needed to be excited, that he was coming however that may be and for however long he was to be here. I realized how he must have felt for us seeing us mourn his coming so much. I then made a clear decision that I was going to be happy and enjoy this time.
It was much easier from then on. We were at peace with whatever the Lord saw fit to give us! People of all faiths were praying for us, calling us and fasting for us! It was amazing to see the outpour of love, even from strangers!! We felt close to the Lord because of so many kind hearts! We truly were being blessed and saw amazing things happen! Our love for each other grew. We still remember this being the hardest time of our lives, yet the most rewarding time also!
Nine years ago on August 30th, at 4:38pm, Tucker was born. He weighed 5lbs., 13oz. and was 21” long. He was so beautiful and strong and did very well right away. We instantly had this amazing love for him and felt his little spirit. He was so sweet and never cried, the nurses said he was so good.
I was at the U while he was at Primary Children’s. It was very hard and I wasn’t able to nurse him because he was having surgery the next morning. I wasn’t able to hold him either until he had had the surgery.
I was so excited to get to know him and love him and care for him. Tuesday morning he went in for surgery for his back and shunt, and everything went well.
September 5th (7 days later) we were able to take him home. I will never forget the love that was shown to us by people in our congregation, friends and people around us! One kind woman told me, “You will gain a greater love for the Savior through your child! You will come closer to the Savior because of the service you will be giving to your son.” That really hit me and I felt so inadequate to raise this special little bundle God had entrusted me with!! What an honor and gift from the Lord!
Really I do not know if I could have made it through this without the strength of friends, parents and members of our church. You know the eternal plan our Father has for us truly brought me comfort many times and still does! To know that because of the Savior, Tucker will be made whole, brings great peace!! When he was 3 he would always tell his friends and strangers that the Lord was going to heal him and make his legs work when he saw the Savior. I was always amazed by his strength and his faith!! I still am really. He is always so strong, still through all he has been through, he still continues to know that the Lord is there for him and that he will be ok.
When he was 1, he spent 30 days in the hospital and there were moments I thought we were not going to be able to take him home! Through that time I struggled with giving it to the Lord, I really feel like that was a lesson for me! He was very sick, and I found myself on my knees a lot! Towards the end of his stay at Primary Children’s I was having a conversation with the Lord. I was telling Him that I just couldn’t do it anymore and that I needed Him to take over, that I needed more strength. As my husband and I were on our knees the most incredible feeling came over us and filled the room. I felt as though the Savior himself was in the room and I remember opening my eyes and looking around the room to see if He really was there. I wish I could describe the feelings that were in my heart. I was given strength and peace and I then KNEW He was watching over us and we were to endure whatever was to come.
Tucker has no feeling from his knees down. One day when he was 5 his socks and braces were off and he had felt his feet with his hands and felt like they were cold so he put them on the fireplace to warm them up. He then said, “Mom look what I did to my feet.” I nearly had a heart attack! We took him up to the University of Utah burn center and we waited for two weeks to see if they would heal on their own. One foot did and the other one didn’t so we had to have skin grafts on that one, which meant another surgery. He healed fast after that and still has scars to show for it.
The hardest part for me is to see all his buddies doing the things Tucker would love to do!! I see him struggle sometimes silently, that is the hardest. He has never complained to me about his situation. He has asked me why he is like that and why he can’t walk. I tell him everyone is different and that is what makes us special. When he struggles with things we watch a video or see someone who has a hard road also and then he is ok. When he was really little, maybe 3 or so he would say, “Well mom at least my arms work and I can see what I am doing.”
All the time he finds the positive about his situation. He is always teaching me so many things!! I truly feel like it is an honor to raise him and that he has made me a better person for what we go through each day!
Today Tucker is 9 years old and a ton of fun! Nearly every day he asks me if he can have a cell phone. We tell him he can have one when he gets a job and buys his own. He really wants to be treated just like any other kid and works hard every day to try and accomplish the same things other kids his age are doing! Every Saturday for 3 months he plays wheelchair basketball. That has been really good for him!
Last summer the shunt that he had for 8 years stopped working. He had to have 3 different surgeries within a month to repair the shunt. The first stay lasted about a week and a half and then the second one lasted over night and we had to go in the next day. Then he started school the next week.
It was a rough summer, but once again he was such a trooper! You never know with shunts, but we have been blessed to have had so many years of it working, when it wasn’t it was hard.
One thing I have learned from all of this is that the Lord does hear and answer our prayers. It is not always the way we want it, but it is always for the best. Even if we do not understand at the time, we will later!
When he was little he would cry whenever the hymns were sung!! We would go to church and he would cry through most all the songs. It wasn’t a scared cry, just a cry like he was feeling something. He is still like that, anytime truth is spoken to him, he gets emotional. He is very tender-hearted and close to the spirit! He loves to sing country with me and loves almost all the Primary songs. He loves family home evening and wheelchair basketball. I have seen his self esteem increase since he has been playing. He has a ton of great people around him and they are easily drawn to him. He has a great, cheerful almost silly personality.
We have been blessed by so many strangers because of him!! He got a guitar for Christmas and is excited to learn how to play. There really isn’t a day that goes by that I am not grateful for him and the spirit he has brought to our home and the things we have learned from him!!
We have been looking into VEPTR rods because he has scoliosis and lordosis. We have put it off for a year now and know that is our next step. That means a surgery every 6 months from here on out. We are not excited about it and are praying for peace again!
My advice to other parents is to love each day with your children and don’t stress the small stuff! There are so many things to learn from these amazing little people and their strong spirits. They truly are a gift.
Now when we hear the song, ‘Angels Among Us,’ we know that is our song for Tucker and feel the words are so true and that is our little answer from our Heavenly Father to let us know we have an angel!
My favorite book to read when I feel like I am struggling with things, and hope to share it with Tucker more fully as he gets older is, ‘Finding Peace in Troubled Waters, 10 life preservers for when your ship springs a leak,’ by Art Berg. He himself is inspiring!! Look him up. AMAZING!! Other people we love, Mike Schlappi and Chad Hymas. Their stories and lives have also been amazing!! I have also been inspired by the book, “No Excuses” by Kyle Maynard. Another good book is “When your Prayers Seem Unanswered” by S. Michael Wilcox . I have read so many it is hard to choose but I think these are my favorite.
One of my favorite quotes is by Orson F. Whitney. He said, “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God. . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father in Heaven.”
My husband reminds me, too, when things get hard, that if we want to sit with the Lord in heaven, like our Savior, we have to go through these things and prove ourselves worthy to be with them. That always strengthens me and helps me because I am certainly not greater than the Savior, and my trials seem small in comparison. It helps me to put things into perspective!!
One more quick quote and then I will be done, is by Ezra Taft Benson. He said, “ Men and women who turn their lives over to God will find out that HE can make a lot more out of their lives than they can. He will deepen their joys, expand their vision, quicken their minds, strengthen their muscles, lift their spirits, multiply their blessings, increase their opportunities, comfort their souls, raise up friends, and pour out peace. Whoever will lose his life to God will find he has eternal life.”
~~~
I have a special place in my heart for Tucker and his family. Mandy found my personal blog through the blogosphere. In response to a post about the hard time we were having getting insurance approval for a stander for my daughter, she emailed me and offered to donate the stander Tucker had outgrown. The stander has brought to pass miracles in my life.
Tucker is currently in need of a new wheelchair. A fund has been created to help raise money for this good cause. If you're interested in donating, go to Ability Found: Speedy Wheels to find out how.
I was at the U while he was at Primary Children’s. It was very hard and I wasn’t able to nurse him because he was having surgery the next morning. I wasn’t able to hold him either until he had had the surgery.
I was so excited to get to know him and love him and care for him. Tuesday morning he went in for surgery for his back and shunt, and everything went well.
September 5th (7 days later) we were able to take him home. I will never forget the love that was shown to us by people in our congregation, friends and people around us! One kind woman told me, “You will gain a greater love for the Savior through your child! You will come closer to the Savior because of the service you will be giving to your son.” That really hit me and I felt so inadequate to raise this special little bundle God had entrusted me with!! What an honor and gift from the Lord!
It was a rough summer, but once again he was such a trooper! You never know with shunts, but we have been blessed to have had so many years of it working, when it wasn’t it was hard.
We have been blessed by so many strangers because of him!! He got a guitar for Christmas and is excited to learn how to play. There really isn’t a day that goes by that I am not grateful for him and the spirit he has brought to our home and the things we have learned from him!!
