LifeScape works with families to manage medically complex conditions
SIOUX FALLS, S.D. (Dakota News Now) - Part of the work done at LifeScape here in Sioux Falls involves helping kids with very medically complex conditions.
We were able to meet a little 4-year-old named Xiomara who is dealing with a rare condition, but she has a lot of people who are working to help her.
It’s a condition that is rare and can be tough to diagnose but little 4-year-old Xiomara Genia is not one to let it diminish her life.
“She’s very strong-willed and when she doesn’t want to do something she doesn’t want to do it.” Erika VanBeek is a nurse at LifeScape. She workes closely with Xiomara at LifeScape’s children’s specialty hospital.
Xiomara has been diagnosed with something called Riboflavin Transporter Deficiency.
“A lot of the nerves that are by her brain stem and spinal cord have either lost their function or they are damaged.”, said VanBeek.
What this means is that Xiomara has extensive muscle weakness, primarily above her waist. It can be tough to breathe and to eat. She has a breathing tube to make that a little easier.
Here at LifeScape, one of Xiomara’s main focuses is physical therapy to improve her core strength and to use her arms and fingers to the greatest extent possible.
But along the way, Xiomara has also become amazingly adept at using her feet to get ahold of whatever it is she might want.
“A lot of the needs of these children are hard to be met at home.” Jennifer Haggar, LifeScape’s chief of staff. She says one of the big advantages of having a children’s specialty hospital as part of their program is that kids can get better but they’re not separated from their families. “Their families can be here. They can be part of their care. They can visit them.”
“She has been doing a lot with her feet since she’s gotten sick.” Thomasena Genia is Xiomara’s mom and says after months of her daughter’s illness being a mystery and a bit of an oddity, she is thankful that LifeScape knows what the issue is and knows what to do to help her daughter manage this illness the best way possible. “Just last week I came to visit and I actually started seeing her sit up on her own and get up and move around.”
Xiomara’s breathing tube means she can’t talk. But she does a device that she can use that gives her a voice; a box that she can tell what to say to get her message across, as nurses like Erika what it is they can to make her quality of life better.
“It’s a progressive disease so it will not get any better at this point we’re just kind of managing it with meds to prevent it from getting worse,” said VanBeek.
Riboflavin Transporter Deficiency is considered a rare illness with one out of one million people being diagnosed with it in the United States.
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