Dear Friends,
This is for our son, Seth Leffler. He loves to be around people, be involved and help out whenever he can. He enjoys life, trying new adventures and pushing the limits of his abilities.
Due to a faulty umbilical cord which delivered only half the needed amount of oxygen, Seth was born blind with cerebral palsy. He was later diagnosed with the Norrie Disease genetic disorder. He has frequent grand mal seizures.
Since friends talked to us about the hyperbaric chamber treatments for Seth, we have been praying for guidance. Hyperbaric Oxygen Therapy (HBOT) is a means of delivering oxygen at an ambient pressure higher than atmospheric pressure. This increase in the availability of oxygen in the body has been shown to stimulate a small increase in stem cell production by 10 treatments and an 800% increase in stem cells in the body by 20 treatments.
HBOT increases mitochondria production which can help 1) wake up neurons that have not died yet but are idling; 2) stimulate the utilization of new neural pathways; 3) helps nerve synapse to work better by modulating them appropriately 4) reduce seizures; 4) increase blood vessel formation, thus supplying more oxygen to the brain and other parts of the body. Most clinical changes in the body are seen between 25-35 treatments but may even take place after 40. Therefore the suggested minimum is 40.
We are planning to do the full 40 treatment sessions. To keep the cost down we plan to do 2 treatments a day as much as possible, coming home for Sabbath. We would appreciate you joining us in prayer that Seth could become completely seizure-free and gain increased motor skills. If you want to help cover the cost This fundraiser is for the treatments, stay, and fuel costs.
As parents, David and I believe that we must guard and help develop the mind that our Heavenly Father has given Seth. When he was quite young I remember him lying under the table and quoting passages of scripture or singing songs. He seemed to be a deep thinker at a young age, though slow at getting his thoughts out.
When he started having grand mal seizures, we started a healthy version of the ketogenic diet. To reduce the frequency of seizures, Seth had a daily can of natural olives or a whole avocado. But even with vitaming B6 added this past year, he is still having them more often.
When he was 4, he was not able to sit up or stand on his own. We had gotten orthotics for him when he was 2, which helped him to stand while hanging on to something, but he couldn’t stand on his own as his right leg turned in.
As a family, we loved to be outdoors and go for walks, hikes, and backpacking. The summer before he turned 4, I started to pray that our heavenly Father would show us what to do or work a miracle. My miracle came in a very strange way. He had been incorrectly cast so that when the casts were removed he couldn’t tolerate even standing. My prayers increased. He had been asking for some time to use the “adult” toilet. But knowing how tight his thighs were and his right knee deviated towards the left knee, I wasn’t sure how it would work. After all, he couldn’t sit without being propped. Whenever he tried something new, it became the thing to do “all” day long. On November 7, 2011, at 9 a.m. we began. He held on to me and I held on to him. He knew he had to go, but it didn’t come. We spent the day, 1/2 hour on the toilet and about a 1/2 hour off. And no, I didn’t get much done for the next two weeks. I remember complaining to my father two Fridays later that I had spent the last two weeks in the bathroom with him. By the second week, he had gained the ability to hold himself on the toilet while I sat on the side of the bathtub. Though I didn’t think about it much at the time, he was learning to release the tightness in his thighs on his own. Every time I had to put him on the toilet, I was pulling his legs apart and stretching him.
That Sabbath evening we were with my husband’s parents, and our two older boys were tumbling after sundown worship. They were encouraging Seth to walk. He started taking steps. One time it was 6 steps before he fell down and another time 5 steps. We were so excited. But that was all the steps he took for a week and a half.
A week after Thanksgiving, the boys and I decided to have a line prayer for school Bible class. Seth was hugging me and then Christian and lastly Aaron. When we finished praying, Aaron exclaimed, “Mommy, Christian has something in his ear. The tick was tucked under the flap of skin above the ear canal. It must have been there for a week or more. But as a seed tick, I initially hadn’t seen it when something had bothered his ear the week before. But now it was filled out. I used rubbing alcohol trying to gently ease the tick to release. But it was stubborn. Again I put rubbing alcohol on. Still, no success so we went to a medical clinic for help.
While in the waiting room friends were sitting across from us. Suddenly Seth announced,” I am going to Mrs. A.” I was concerned as she was a very fragile lady in her 80’s. I thought he might fall into her and hurt her in her wheelchair. He seemed confident. He stepped across the gap. Said, “Hello” to her. Then said he wanted to go walking. These were the first steps on his own since the Sabbath almost two weeks before. Now, he wanted to go walking, I had conflicting thoughts running through my mind. He wants to walk. This is fantastic, but he is blind and can’t see all the furniture in the waiting room. What if he stumbles into furniture or people or falls and hurts himself or others? So I leaned over his body and put my arms out away from his body so I never touched him, but was there just in case he needed me or to be able to give directions. When Christian and the rest of us went back to see the NP, I just gave him left and right directions and he walked back. I was praising our Heavenly Father for his blessings. This was his miracle. How thankful I was!
The next Monday, he had a pediatric PT appointment. I came down the hallway, hovering over our precious child. Keri, our PT asked how my back was doing. I really didn’t care if it might hurt. I was so excited that he was walking.
On driving into our driveway, Seth said to me, “I am going walking.” This meant that he usually walked the hallway or around the living room with me hovering over him. Today though he added, “You do what you need to do. I am going walking.” I read this to say. I want to walk by myself. I took a deep breath, he would run into furniture or... It was almost sad not to be needed, but I knew that this was another important milestone. To give him the freedom to walk, Seth used a reverse walker for some time. This type of walker trails behind the person. It keeps the posture upright.
Two months later in mid-January 2012, I had the crazy idea that he could learn to ice skate. That was a challenge. I was wearing my skates and I put him in skates also. I hadn’t thought of the physics of the whole operation. Thankfully a kind young man, Alex B., who was also employed by the rink came to my rescue. For over a month we went ice skating and Seth learned to skate a little. Unfortunately, the management and policies at the rink changed the next year, and that was the end of ice skating.
I thought he could learn to play the violin. His first teacher was Livia L. and after she moved away, Carla T. became his next teacher for several years. I cried through his first recital two years later. I hoped there would be a breakthrough for his right arm, but it didn’t happen. (Just before the world turned upside down with Covid, he had started cello lessons and felt it was easier, but it was slow going and because of circumstances he hasn’t continued playing.)
A year later in early 2013, my husband cut his hours as a PT and we learned to live on a smaller income. He started working in the afternoons with our son. Seth enjoyed Daddy spending 2 hours a day with him. Before this time he couldn’t hold onto a tricycle handle with his right hand or keep his feet on the pedals. But our Heavenly Father blessed the efforts. We bought a tag-a-long and he was able to hang on the handlebars and pedal using bicycle toe clips. It was a great accomplishment. The boys and I did lots of biking around Andrews University and town. We had to teach him when to stop pedaling. One time we needed to stop to wait for traffic before crossing a street. He was pedaling so vigorously that I couldn’t stop the bike with the tag-a-long. The best thing to do was fall over in the grass. He was not impressed with the sudden fall. But glad to be safe and he still enjoys biking, which is an exercise that the whole family can enjoy together.
A couple of months before Seth turned 9, we decided that he should learn to dress himself by the time he turned 9, although his right arm doesn’t function normally and his left has mainly gross motor skills with only some fine skills. His right hand has only very gross motor skills. He didn’t think he would ever learn. There were tears. But persistence paid off.
Last summer 2022, to gain some more dexterity in his right hand, he took pottery classes from Concetta M. He enjoyed learning to throw clay and has made a number of items including bowls, plates, drinking glass, and 2 vases. He loves his teacher and hopes to begin taking classes again when grant money comes through.
Seth is now 15 with a deep voice, a desire to follow God, and an enjoyment of nature and adventure, which takes a lot of trust. Yesterday afternoon, we hiked up the side of a mountain to springtime falls. This was quite the adventure as there was no path and we had to bushwhack. Thanks to my husband, sons and friends, Seth made it up and down safely.
Seth’s favorite Bible passage at this time is:
Numbers 6:24-26
“The LORD bless thee, and keep thee:
The LORD make his face shine upon thee, and be gracious unto thee:
The LORD lift up his countenance upon thee, and give thee peace.”