A family determined to care for their special needs children in their St. Olaf home

Source Link: Clayton County Register, Clayton County, Iowa

Brian and Thea Rentschler of St. Olaf have been dealt a hand of which very few would choose. Area residents have probably noticed the signs posted throughout the region advertising the Rentschler Family Benefit to be held this weekend, Saturday and Sunday, April 4 and 5 at C.J. Lanes in Elkader.

The Rentschlers are a young couple in their late 20s who are heroically dealing with an extremely rare set of problems. Brian is the son of Rick and Beth Rentschler and is a 1997 graduate of Central Community. Thea is the daughter of Bob and Cindy Bechtel of Decorah and is a 1998 graduate of MFL/Mar-Mac. The couple is parents to three children, Allison (11), Haley (7) and Peyton (2).At the age of one, Allison was diagnosed with cerebral palsy, mild mental retardation, cortical visual impairment and bilateral hearing loss. While she now can walk with a walker, she is not able to perform basic life functions and requires constant help from the adults in her life. Brian and Thea were 18 years old when Thea gave birth to Allison. As a very young couple it was financially and emotionally difficult for the couple to deal with the medical needs of their daughter. Amazingly their love for each other and Allison kept them focused on caring for Allison while also strengthening their marriage. The two worked hard at their full time jobs in order to meet the needs of their young family.

During those years, the naysayers had plenty of which to naysay, yet the two defied the odds, and even through adversity became a stronger couple. When Allison was three and half, Brian and Thea felt very fortunate to give birth to their second baby girl Haley. Of course, given their history, they were legitimately nervous this baby might also have mental or physical impairments. They watched in awe as Haley normally developed free of impairments. Haley is in first grade at Central, and according to her parents is "wise beyond her years." Haley adores her brother and sister and she is a constant helper to her care-giving parents.

When Allison was eight years old the couple decided to have another baby and really hoped to have a little boy. In fact, after a completely uneventful pregnancy they gave birth to their, "little man," Peyton. The two were thrilled because everything seemed to go so well. Unfortunately before they left the hospital the two were alerted by Peyton's physician that he had not passed his newborn hearing test.This was a blow to their happiness, those familiar frightening feelings were back on the table, and little did they know this would be the least of Peyton's problems. As they had become accustomed, Brian and Thea began to tackle the issue at hand. First the hearing tests and doctor visits were conducted. They quickly learned Peyton was born nearly completely deaf. The best hope for his future was to undergo expensive cochlear implant surgery. Just before his first birthday the couple arranged for his surgery at the Mayo Clinic.The Rentschler's were very pleased with the results of the surgery. Over the next year Peyton quickly developed. It was obvious he could hear sounds. He began to perform typical tasks like feeding himself, he learned to belly crawl, played with toys, laughed and smiled with his family. Peyton had regular therapy sessions with an AEA therapist to help with his hearing and gross motor development.

All in all, the family had plenty of reasons to believe the worst was behind them and to forge forward with a positive outlook.Sadly this time of happiness lasted for only a short period of time. In August of 2008 the family's life with the joyful baby boy began to change in dramatic fashion. Peyton began to show signs of withdrawal, his head would spontaneously fall forward, he rapidly began to lose all the skills he developed and experienced a multitude of seizure episodes. Peyton no longer would hold a cup or sit up. He withdrew from his happy interactive world and no longer seemed to recognize anyone in his family. His conditioned worsened as he experienced four different types of seizure episodes, up to 20 times a day.After several months of neurological testing and just before his second birthday this past December, Peyton was diagnosed with West Syndrome/Infantile Spasms which is a severe and rare form of epilepsy. Only four in ten thousand children are diagnosed with this illness.

Brian and Thea were told, Peyton's prognosis was not good. They realized his cognitive impairments were worse than Allison's. He was put on a hefty round of steroids and seizure medications. They prayed the medication would lessen the symptoms but unfortunately the symptoms continued to progress. Peyton began to choke and aspirate when he ate.

Soon, Thea was forced to cut back and eventually quit her job as a medical transcriptionist in order to meet the needs of her son.Last month the couple returned to the Mayo Clinic to begin a different form of treatment for Peyton. Doctors began withdrawing the steroids and started the baby on a Ketogenic diet. The Ketogenic diet is an intense and complicated regiment of high fat foods and very few proteins and carbohydrates. Peyton eats on a strict timeframe and all of his meals are digitally weighed to control his caloric intake.

The parents refer to a binder of information provided to them by their physicians containing prescribed menu plans. One example of Peyton's meals consists of 1/4 of a stick of melted margarine with 23g of a chopped group B vegetable like carrots, beets or green beans and about one slice of Kraft Deli Deluxe American Cheese. The menu shopping and planning are tedious chores. This diet is painstakingly specific and in many cases the high fat items must be a particular brand. Thea says she spends a ton of time just planning the shopping trip. In addition, the Keta Cal formula which Peyton must drink is very expensive.

Yet the parents are convinced this new strategy has already proved its weight in gold. Last month, in the hospital where the diet was first introduced, Peyton remarkably smiled at his parents giving them a glimmer of hope that maybe the boy they knew was coming back.

Now a few weeks later they are observing a 50 percent decrease in Peyton's seizure episodes and more and more interaction. Thea's dream is to see Peyton seizure free by summer. This is so important because his brain needs time to heal and cannot when it experiences so many seizures.

Through it all, the couple remains strong and determined to care for their children, at home, in the best way possible. Of course in their 10 years of parenthood and especially when Peyton's symptoms began they have had their moments of self pity. However the very practical Thea realizes pity gets them nowhere and the best way through this battle will be with a clear head and unwavering devotion.

Sheer determination may not be enough to keep this family together. Thankfully their friends and family understand the family needs for assistance and have organized the Rentschler Family Benefit. The home they live in is not set up to accommodate the lives of two children with such special needs. The medical bills they have incurred combined with the continued expense of Peyton's diet and medication is taking a toll.

Until now, Brian and Thea have been coping with their problems the best way they knew how. When they were approached by their friends with idea of holding a benefit in their honor they were immediately resistant to the idea. In this case the determination of their friends won out. Fortunately the couple saw the wisdom in realizing that sometimes it is the strongest of people who let others help.