Sioux Falls family cherishing final Christmas together
Holiday photographer, supporters rally for South Dakota girl with terminal diagnosis: 'We can grieve when she’s gone'
Sandra and Lee Clemens first noticed their daughter’s right-sided facial droop in January.
“We went to the ER, and they said it was bell’s palsy,” said the Sioux Falls mother, who learned then that daughter, Eva, had Bell’s palsy, a facial drooping that comes on quickly.
Most often, it’s caused by a viral infection, and it usually resolves on its own within a few weeks.
But that wasn’t the case for the second-grader.
In May, during a check-up, doctors determined the 8 year old “couldn’t hear on one side,” Sandra said in a recent interview with The Dakota Scout.
She immediately had an MRI. The official diagnosis: a diffuse midline glioma (DMG) — an aggressive, inoperable tumor on the brain stem.
The average life expectancy of children with her diagnosis is nine to 12 months.
Terminal illness had struck the Clemens family.
Six months into the diagnosis, Eva is stable, though she has right-sided weakness. As the tumor grows it will push on the brain stem interrupting essential bodily functions like heart rate and breathing. Once that happens the decline is rapid, doctors warn.
Eva doesn’t know all those details. She does know she has a cancerous tumor that cannot be removed.
“We want to keep her as innocent as possible. She doesn’t know what lies ahead,” Sandra said.
After the diagnosis, Sandra called Christopher Reistroffer, owner of Reistroffer Design — a portrait, commercial and event photography studio — to capture images of Eva and her little brother, 5-year-old Theo, together.
The Sioux Falls man knows how precious photographs can be. The more time that passes, the more cherished they become.
“These will be how Lee and Sandra remember their daughter,” he said.
With Eva’s dire diagnosis, the photos taken now will be treasured forever.
Reistroffer was so moved by Eva’s story he decided to donate 20 percent of the profits from this year’s “Arctic Express” holiday photography extravaganza to the Clemens.
“This will be her last Christmas. If we can raise enough money, they can hopefully take the next few months off to be with her,” he said.
A cancer diagnosis is like a bomb going off within the family.
“It brings things into perspective,” Sandra said.
Eva had a brain biopsy followed by 30 rounds of radiation in June and is now part of a vaccine trial in Minneapolis. The family travels there every eight weeks for an MRI and antibody injections to attack the tumor.
The family perseveres.
Eva plays with her Barbies and roughhouses with her beloved dog. She goes to school and does dance. The family is spending extra time with relatives and preparing for Christmas. They picked out new ornaments and “set up the Christmas tree before Thanksgiving,” Sandra said.
They enjoy each other with a new reverence.
Cancer does that.
“There is no handbook on how to have a kid who has cancer. You are not given a choice. You do what’s best for your family. We’re trying to soak up all the moments,” Eva’s mom said. “We can grieve when she’s gone.”
What is The Arctic Express?
The Arctic Express, located in the Jones Building in downtown Sioux Falls, is an immersive, interactive Christmas experience for individuals and families to have their portrait taken.
The studio is decked out with hundreds of twinkling lights, props such as pretty presents, lanterns, sleds, benches, snowshoes, even indoor snow with Santa and Mrs. Claus.
The goal is to capture the unique, magical experience reflected on a child’s face producing a professional portrait that becomes a treasured keepsake.
You can schedule a photography session for $165 OR tour through the space and take your own selfies for $10 per adult.
Twenty percent of income earned will be donated to Eva and her family.
Spots are available through December.
Call for availability and appointments. 605-929-3730. CHRIS@REISTROFFERDESIGN.COM
The studio is located in The Jones Building 421 N. Phillips Ave. Suite 123 Sioux Falls, SD 57103
Go to the website for more information www.TheArcticExpress.com
If you would like to donate to Eva’s go fund me account, go to: gofund.me/mallory-folk-08may
Sioux Falls-area organizations supporting the Clemens benefit through the Arctic Express include Accent Event Design, Jones Seed Co., Halbach Szwarc Law Firm, Godinez Solutions, The Dakota Scout and Sioux Falls Santa.
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Beautiful and heartbreaking. Sending prayerful vibes to the Clemens, and a grateful thank you to Christopher for helping them and highlighting their struggles.
Pausing to pray for this young family. So hard.