By Carol Schreiber
Staff Writer
With the season of Thanksgiving, it is the perfect time to say thank you to some well deserving organizations and businesses.
Over the past few months, two young children have been recipients of “wishes.” Three-year-old Josten Rostomily and four-year-old Aiden Remme will have the opportunity to enjoy camping and special family time in the future, as each received a camper and related items.
Josten is the son of Jason and Shalaine Rostomily, Sioux Falls. Jason grew up in Heron Lake, the son of Eva and the late Lad Rostomily. Jason works for Prairie Rehab, primarily at their 26th and Cliff location in Sioux Falls. Shalaine is a graphic designer in the marketing department of Sanford Hospital.
Aiden is the son of Chris and Tracy Remme of rural Brewster. The grandson of Tom and Darcy Busch of Brewster, and Jerry and Deb Remme of Jackson, Aiden has been battling brain cancer since February 2016. Aiden’s great-grandparents are: Joan (Suedkamp) Johnson of Magnolia; Harriet (Schmitz) Miller of Brewster; Vi (Bohn) Busch of Worthington; and Sandy and Maynard Pick of St. Cloud. Chris works at AGCOC in Jackson, and Tracy is a teacher at Round Lake-Brewster School
Josten Rostomily
Josten Rostomily recently was granted a wish through Make-a-Wish and Central States Manufacturing of Hartford, South Dakota.
Josten was diagnosed with Glanzmann thrombasthenia when he was four months old. An extremely rare blood platelet disorder, Glanzmanns means that Josten’s blood will not clot. “Bumps and bruises swell more, and he has problems with nosebleeds,” explained his father, Jason. Any cut or injury can be life threatening. “We try to be as normal as possible, but still take precautions,” Jason added.
An oral medication is taken for many small bleeding issues, but for significant bleeds or injuries, an intravenous medication, NovoSeven, is required. “He has a permanent port, for the IV med,” Jason continued. This port is flushed monthly at the Sanford Children’s Hospital, or as Josten calls it “my Castle.”
Along with monthly visits to the Castle, Josten makes an annual visit to Mayo Clinic in Rochester. Since Glanzmanns is so rare and with limited research done, Jason indicated that some doctors are not familiar with or prepared to treat it. “We have a great team that we work with,” he said of the Hematology and Child Life staff at the Castle.
It was that team that nominated Josten for a wish from the Make-a-Wish organization. Once the Rostomilys learned they were accepted, discussions took place to determine a wish.
“From the time we received the ‘you have been granted a wish’ call to the time we are writing this post has been an amazing journey. Josten was accepted into the program because his bleeding disorder is a life threatening condition,” wrote Shalaine in her Facebook post following the wish event.
Central States Manufacturing sponsors a couple wishes each year, and they have a “giving back committee” who works to select someone in need and grant a wish. When they learned of Josten’s story, they selected him and granted his wish. “It’s an awesome company. They went all out,” Jason explained. “They really made his day with so many fun things.”
Josten’s wish event was held on Friday, November 10, beginning with a red carpet and limousine ride from his home in Sioux Falls to the mall. “Josten was told he was getting surprises and a big party just for him and our family to celebrate his life, but that was all he knew,” Shalaine explained.
The Build-A-Bear Workshop was the first stop, and Josten along with his six-year-old brother Anderson, were able to build their own bears. Anderson chose a Pokemon bear, and Josten selected a character from Paw Patrol. Team members from Central States Manufacturing were there, the plan was changed, and Josten was able to get all the Paw Patrol characters.
Next stop, Scheel’s, where Josten rode the Ferris Wheel with his dad, and picked out several items, including a fishing rod, tackle box, sleeping bag, chair, yard games and more. Anderson also got to select a fishing rod. He “is extremely patient and loving and about the best big brother Josten could ever hope for,” Shalaine added. “We’re so proud of him!”
Back into the limo for a ride to Hartford and Central States Manufacturing. A larger group from the company along with many family members and friends had gathered to celebrate Wish Day, and see the final portion of the wish.
A beautiful new camper, “the Cadillac of pop-ups” according to Jason, was the final surprise of the day for Josten. “It took him only a split second before animatedly running towards the open door and jumping on the bed first thing,” Shalaine wrote about seeing the high wall pop-up camper from Flagstaff.
Camping allows the Rostomily family to “get away from it all and just be together… This is essentially the gift that keeps on giving because it will last for years,” Shalaine added. “Every time we use this incredible gift, we can think of this day and the love and blessings bestowed on us. In my mind, this camper represents our support system and the thought that we are in no way alone.”
There are no definite plans yet for using the camper, but the family will be looking forward to warmer weather to do just that. “Our first trip of the year is usually to visit mom at Cutty’s in Okoboji” Jason said, “and we enjoy going to Newton Hills and Union Grove State Parks near Sioux Falls.”
The Rostomilys are very grateful to Make-a-Wish and Central States Manufacturing for the wonderful wish day and surprises. “When we couldn’t possibly fathom how they could make it any more special, they found a way to do just that. The creativity and effort was astounding and greatly appreciated.”
“The chance of Josten having Glanzmanns is so rare that it is literally one in a million,” Shalaine wrote. “Thanks to Make-a-Wish and Central States Manufacturing, tonight he FELT like one in a million.”
Aiden Remme
Aiden Remme received his wish earlier this year through the Jackpot Junction (Morton, MN) Angel Fund. Southwest RV Wholesale of Sheldon, Iowa, assisted with the wish.
As his mother, Tracy, explained on Facebook in July, the receipt of the camper was one that came about after they were unable to go to Disney. “There were a few different times we had considered taking off and going to Disney but it just wasn’t the right fit for Aiden. Right before his life threatening surgery of his inoperable brain tumor was one of those times but the pressure in his head was just to much to enjoy such a trip.”
It was then time to brainstorm for a second idea for the Angel Fund grant that they received from Jackpot Junction, Morton, MN. Funds for the Angel Fund are donated by employees at the casino.
When the family was honored as the “Bless A Family” this summer at Rise Fest in Sheldon, Iowa, the Remmes had stayed in a camper, courtesy of Southwest Wholesale RV. They had often camped prior to Aiden’s diagnosis.
“We used to go camping with the kids in our very old pop-up camper. We purchased it for $300 as any young broke couple would do. Our camper though had issues. It had mold. It had no air. It had no shell. All of which were things Aiden needed to have so he didn’t get sick while on chemotherapy,” Tray explained. “The soil is the number one thing Aiden is not supposed to be around, so the shell of a camper helps to provide some shelter where he be able to take off his outside mask.”
After Aiden’s diagnosis, he didn’t understand why he couldn’t go camping, and was upset about it. “To my surprise, a camper was what he wished for. I thought he may have forgot about camping but it turned out he understood,” Tracy added. “He understood he was just too sick to be exposed to our camper.”
The Remmes looked for a camper within the Angel Fund grant amount, and were unable to find one that didn’t have issues. They traveled to Sheldon, to visit with Mark, the owner of Southwest Wholesale RV, to see if he could help find something.
“Aiden had the best experience. He got to walk to any camper he wanted to look at. He would try out the steps, check out the bed, and would look to see what worked for him. So cute! He was the boss on what we checked out next,” Tracy wrote.
“Mark directed him towards ‘his camper’. Aiden said ‘Yep, this shall be juuussstt right’. The camper was more than what would work for the grant. Mark was awesome in making Aiden’s wish come a reality and putting in an additional donation. He insisted on us getting this camper, as it has no issues with it and will not cause issues for us in the future.”
A happy young man and his family picked up the camper, and “tons of camping supplies.” Both Aiden and younger brother Carter were able to select a toy camper/truck as well.
In addition, the staff at Southwest Wholesale RV had added a large handle bar, fitted just to Aiden, to help with the stairs.
Aiden has been able to enjoy some family and friend time with his camper, although not as much as they would have liked. Early this month, he completed a full year of treatment for chemotherapy. “The chemo is done for that treatment, but that doesn’t mean he’s completely done,” Tracy pointed out. The family traveled to Rochester on Monday for additional scans, with the results and future plans and/or treatments to be determined on Tuesday.
