Schledewitz benefit Sunday, May 5

Potter Youth Group of the Prairie West Church and Beta Sigma Phi Sorority will be working together to host a benefit supper and silent auction for Sawyer Schledewitz the son of Coralea and Tyson Schledewitz, grandson of Ralph and Linda Godlien of Ottawa Ontario Canada and LuAnne and Carl Isaacs and great grandson of Ruth Slama all of Potter. It will be held on Sunday May 5th from 5:30 to 8:00p.m. at the Potter American Legion Hall. There will be a sandwich, salad and dessert meal along with a silent auction.

Our goal is to help Sawyers family with expenses they are experiencing with his recent diagnosis. Please come support this young family and this adorable young boy. If you are interested in donating items for the silent auction and or food, please feel free to contact Peg Musil @ 308-879-4258 or Donna Juelfs 308-249-0003. Any and all help is appreciated!!

For those of you who may not be aware, the following is a story written by his parents of his life and what they have been experiencing over the past couple of years….

Sawyer’s Story….

Sawyer was a fighter since his birth. It started with mommy being flown to Denver for preterm labor at 28 weeks along. She was kept in the hospital for 3 weeks until Sawyer was born 9 weeks early. He weighed 4 lbs 4 oz. He had to learn to keep his body temperature, learn to eat by mouth, gain weight, and be healthy enough to go home. He finally went home when he was 6 weeks old. Being a preemie, we had to keep him in a bubble for his first year of life. We had to hide him away from all the viruses that may be a normal cold to someone else, but would be life threatening to Sawyer.

Finally his first birthday came. We were excited to take him out into the world and show him off to everyone for the first time. Four days after birthday he had his one year checkup with his first year shots including the MMR shot. One hour after he received his vaccinations he had his first seizure. They drilled holes in each shin bone to try to get an IV in. They did a spinal tap, and a CAT Scan. The Doctors could find no cause. We were told for the next year that he simply had Febrile Seizures, that come with a sudden spike in body temperature. We knew it was something much more than that. But Doctors still had no answers.

He had one hospital stay after another, seizure after seizure. The Neurologist had no answers either. Medication after medication, he had seizures for 1.5 years. We were finally referred to an Epileptologist at Children’s Hospital in Denver. But only after the worst seizure he has had to date, lasting 10 minutes. He stopped breathing and Mommy had to give him mouth to mouth. He was flown by Med Jet to Denver to finally receive tests we have been begging the Doctors to do for months. He was finally diagnosed with Doose Syndrome in January of 2013.

Doose Syndrome is a very rare epilepsy with only 1% of epilepsy being Doose Syndrome. It is very drug resistant and extremely hard to treat. He takes 16 pills a day that we must crush and mix into flavored water and force him to take it 3 times a day. It also comes along with a risk of SUDEP (Sudden Unexplained Death in Epilepsy). The diagnosis is not yet finished though.

He recently has had blood drawn for genetic testing for genetic mutations that may show markers to a different diagnosis which are worse than what he is currently diagnosed with. The first is Dravet Syndrome. The seizures would eventually cause so much damage that he would end up in a wheel chair unable to care for himself for life. The second possibility is Batten Disease, which is terminal. We are praying it remains a Doose diagnosis.

At Sawyer’s worst, he has over 100 plus seizures a day. He is then unable to talk, walk, eat, play, smile, laugh or be happy. He must be held like an infant. He must be fed like an infant. He cannot hold his hand to his mouth to drink. He must wear a helmet to protect his head from sudden drops that occur throughout the day. It is the worst feeling in the world not to be able to help your child. There is absolutely nothing we can do for him but hold him, wipe away his tears, and tell him we love him, and to ask him to keep fighting. Our little boy was disappearing before our eyes. He was a shell of the happy and sweet soul that we knew and hoped was still inside. We were terrified we would never hear his laugh again, or ever hear him say “I love you”.

So with a total of 3 Medical Jet flights and one Helicopter evacuation, numerous ambulance rides under his belt at only 2.5 years old, he started the Ketogenic Diet in hopes of controlling the seizures. Sawyer was checked into the hospital for 4 days. On the 2nd morning he woke in his crib. He sat up and smiled! Then he said “Hi”! It brought tears to my eyes. It still does. Our boy was coming back to us! He had no seizures for two weeks. We were given a Christmas Miracle.

The seizures came back. They will continue to come back. That is the demon he is fighting. It has its grips into his brain and there isn’t anything we can do about it. The Doctor described it as his brain believes its normal state is to be seizing. So anything you throw at it to try to stop the seizures, the epilepsy is always trying to find a way around it. So, once you think you have the seizures under control, you are still waiting for them to start again. Each time he relapses his development does also.

Despite all he is going through, he is our miracle. Our blessing. Our HOPE! We pray one day there will be a cure. We will be fighting for our Sawyer. We won’t let go. Never.

Written by his devoted Mother and Father, Coralea & Tyson Schledewitz

Please come support this family on Sunday May 5, 2013 from 5:30 to 8:00 p.m. at the Potter American Legion Hall!