This past week has had more highs and lows than at any point since Ashten Pomerico’s 9-year-old son, Rydder, was admitted to the children’s hospital in Omaha, Neb., Aug. 19 to prepare him for a bone marrow transplant.
“It’s been an emotionally trying couple of days,” said Rydder’s mother, Ashten, of Huron. “His primary diagnosis is SCID, Severe Confined Immune Deficiency. That is the reason he needs the bone marrow transplant.
“His secondary diagnosis is CHH, Cartilage Hair Hypoplasia,” Ashten said. “CHH is a very rare form of dwarfism. He doesn’t have physical characteristics, all of his limbs and bones are normal. He has a short stature, that’s it.
“There are only a thousand documented cases of CHH in the world,” she added. “They are not to have live vaccinations. We did not know that. All of Rydder’s life he had reactions to vaccinations.”
Live vaccines contain live microorganisms which are still capable of replicating within the host. The microorganisms are weakened, meaning that they have lost most of their disease-causing capacity but are still in possession of their immunogenic properties.
To help the family defray medical expenses, an online auction is planned on Sept. 29. Donations for the auction are needed by Wednesday, Sept. 8, and can include children’s clothing, household items, toys, home decor, gift baskets, gift certificates, etc.
Drop off sites for donations are at the Huron Campus Center, 333 Ninth St. S.W., and after 5 p.m. at Country View Estates, 764 Illinois Ave. N.W.
If donating larger items please call or text 605-350-7139.
There is also a benefit account under Team Rydder at Dakotaland Federal Credit Union.
More information can be found on the Team Rydder Pomerico Facebook page.
Ashten said she began asking doctors if there was anything wrong when he reacted each time he received vaccinations, starting with his 18-month shots.
“They said it was a normal reaction, but it was damaging his bone marrow every single time,” she said. “After his 18-months shots, he was hospitalized and they did a bone marrow biopsy to test for cancer. We’ve been to every Sioux Falls specialist.”
Ashten and her husband, Ryan, lived in Sioux Falls when Rydder was a baby, moving to Huron in 2017. They are also parents of Landon, 13, Royall, 5 and Bankks, 1.
“We caught him up on vaccinations when we moved to Huron when he was starting first grade,” Ashten said. “Immediately he had mono, then mastoid bone infection. They removed the mastoid bone behind his ear. Then they thought he had meningitis. That kicked off my senses that the vaccines were causing the issues.
“In 2018 I called out the pattern of infections and things that happened immediately after each vaccine,” she said. “It turns out, it (the live vaccinations) killed his immune system. Over time they just depleted his T-cells and caused a lot of damage. That’s where we’re at with it.”
A bone marrow match had been found for Rydder, and his transplant was scheduled for Sept. 1. Tragically, two days prior to the transplant his donor was killed in an accident.
“Tuesday he was scheduled to donate his bone marrow, and Wednesday was to be the transplant,” Ashten said. “We were frantically calling donor No. 2 and donor No. 3, they weren’t available until the 9th or 10th. That was too long for his immune system.
“They were frantic,” she said of the medical team. “Our transplant team called all over the country and could find nothing. No one had heard of this happening since 9/11 shut the country down.”
The fourth choice was to use stem cells from a baby’s umbilical cord for the transplant.
“That is what we used,” Ashten said Wednesday, 45 minutes after the transplant was completed. “It’s not ideal. They are naïve cells, no memory, they’re brand new.
“His vitals are amazing,” she added. “We should know if they’re growing in two to three weeks.”
Had the stem cells not been available for the transplant, Ashten said she was prepared to donate her own bone marrow. “I’m a 50 percent match. It’s not great, but it’s better than nothing.”
Rydder goes to school when he is able, although he misses a lot because of illness and doctor appointments.
He’s a fourth-grader at Washington School.
“He knows everything,” Ashten said about his condition. “He’s very intelligent. We have equipped him with all the knowledge we have. We wanted him to be included in every decision. He doesn’t like sugar-coated information. He wants to hear everything.”
Standing at 3-feet, 5-inches, Rydder is a dynamo who lets little stand in the way of what he wants to do.
“Overall, he is the most positive kid I have ever met,” Ashten said. “He never complains. The nurses at the Castle at Sanford in Sioux Falls call him the King of the Castle. He’s definitely their favorite. They spoil him rotten!”
What bothers Rydder the most is not having his whole family together. “We can have two people bedside. We can be here one or two at a time, but we can’t all be together,” Ashten said. “We’re a really close family. It’s hard to stay away from each other. We do a lot of video chatting. My husband is a saint — working crazy hours (at Trussbilt) and taking care of our household,” she added. “I work for First Premier Bank, I’m on unpaid leave.”
Ashten said she has a great support system of family and friends she talks to daily who help her cope, and she also pointed to her faith and prayers for giving her strength.
Her husband’s parents, Julie and Mark Pomerico, live in Huron, as well as his grandparents, Nick and Pat Pomerico. Her parents Trisha Parkhurst and Brad Mendel, and grandparents Arla and Norm Mandel and Sandy and Cliff Parkhurst, also live in Huron.
“I try to remain as positive as possible,” Ashten said. “I know negativity and fear is not good for Rydder.”
Ashten said people have dropped meals off for her family, and that has been a comfort to her as well as a blessing for her family. “It’s a long period of time,” she said. “We’re down one income completely. I’m hoping we can be home by Christmas.
“The Team Rydder Pomerico page on Facebook has all the updates and information,” Ashten said. “I accidentally went viral — I don’t know how. Now there are people all over the country wanting to know how to donate bone marrow. Go to ‘bethematch.org.’ They need as many donors as humanly possible. It’s really important.”