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Ellanor’s battle for health

Fundraising continues for two-year-old with rare blood ailment

Ellanor Siefkes of Sleepy Eye continues to recover from a bone marrow transplant in Minneapolis.

Ellanor Siefkes, the daughter of Katie and Caleb Siefkes of Sleepy Eye, is two years old, but much of that time has been spent at the Fairview Masonic Children’s Hospital in Minneapolis. Ellanor began dealing with a series of unusual infections at about five months of age. She was hospitalized for an aggressive infection at Fairview Masonic Children’s Hospital in Minneapolis when she was 10 months old.

Ellanor came back home to Sleepy Eye on Feb. 28, 2022.

“She’s making good progress. We saw her just last Saturday. She’s a little bit ahead of schedule,” said her grandfather, Pastor Phil Siefkes of Sleepy Eye.

At Children’s Hospital, the Siefkes learned Ellanor’s neutrophil (the body’s defense against bacteria) counts in her blood were very low.

For six months, the hospital hematology department tried to determine what caused Ellanor’s neutropenia. Testing determined she had a genetic mutation called ELANE Mutation Severe Congenital Neutropenia.

Ellanor Siefkes of Sleepy Eye continues to recover from a bone marrow transplant in Minneapolis.

Due the severity of Ellanor’s infections, she was prescribed medication to help her bone marrow grow blood cells for a year. It greatly aided her infections but it was nearly impossible to get the correct dosage to be effective and not cause severe bone pain.

After many injections, sleepless nights and trying different dosages, doctors agreed to a bone marrow transplant as the only way to improve Ellanor’s quality of life and sustain her.

Around her second birthday, Children’s Hospital referred her to the University of Minnesota Bone Marrow Transplant (BMT) program to consult with doctors.

Tests of Ellanor’s five siblings showed she had a fully-matched donor available in her brother Josiah. It was decided to move forward with BMT.

Ellanor and Katie moved to the Ronald McDonald House, on the third floor of the hospital in November 2021. The spacious facility is the largest in-hospital facility in the Upper Midwest serving families with children receiving intensive care unit treatment. It offers parents as place to rest and regroup just steps from their child.

Ellanor walks the halls of Children’s Hospital with help from an assistant to handle her tubes.

They began the four to five-month process where Ellanor needs to be in or near the hospital all the times. The transplant, described by the family as a beautiful display of science, brother’s love, and God’s mercy, went well.

Ellanor is recovering well. New blood count numbers are encouraging. The prognosis for her is good with new bone marrow to produce cells she needs.

The Sleepy Eye. St. Mary’s Knights of Columbus Council 3134 are leading efforts to sell teddy bears to raise funds. The bears are expected to arrive soon.

“We’re finding that teddy bears are not exempt from shipping, inventory and staff issues like many things are now,” said Brian Braun of the Sleepy Eye K of C.

Teddy bears are being sold for $20. Donations help Eleanor and her parents cover medical costs. For giving information, email mgrausam@sesmschool.com. Knights of Columbus teddy bear drive locations include many businesses in Sleepy Eye, Comfrey, Springfield, Cobden, Darfur, Essig, New Ulm, Mankato, Redwood Falls and Hutchinson.

The Katie and Caleb Siefkes family includes front row, left, Elijah, Annika and Micah. Back row, Greta, Katie, Josiah, Caleb and Ellanor.

For more information visit https://www.osvhub.com/stmarysleepyeye/funds/kc-benefit

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