SIOUX FALLS, S.D. (AP) - Taija Rezac doesn’t know if she’ll be able to watch her daughters grow old.
Both Aiva, 2, and her infant sister, Tatym, suffer from a rare genetic condition that slowly eats away at both body and mind, the Argus Leader (https://argusne.ws/2aeMtyH ) reported. Patients diagnosed with fucosidosis sometimes die before finishing childhood. Some make it to mid-adulthood.
“I don’t know how it comes to the end,” Rezac said. “I know there’s a lot of respiratory issues.”
Friends and family are organizing a fundraiser this weekend for the Sioux Falls girls and their parents as they struggle under the financial and emotional tolls of the condition.
Both Rezac and her fiancé, Avram Stapf, gave up steady incomes to be with their youngest, Tatym, who is recovering from a bone marrow transplant in a Twin Cities hospital.
Rezac, 26, left her job at Sioux Falls Ford in August.
“Ever since we found out about it I have been home with the girls,” Rezac said.
Her fiancé has been on family medical leave for the last six weeks, since after the transplant. Hoping to make things easier on the family, Rezac’s aunt and her best friend from high school teamed up to plan an event this weekend at the Fresh Horses Saloon.
“I just wanted to try to be able to help in some way,” aunt Denise Freeman said. “It’s hard to come up with the money if something happens unexpectedly.”
Beginning at 2 p.m. Saturday, there will be a silent auction, along with a bean bag tournament and a raffle to raise money to help cover travel or medical expenses.
People can also donate directly by contacting Freeman directly (605-212-8637), or by visiting a gofundme.com page started to help the family.
Between raising two other children in addition to their daughters, the couple has been living in a Twin Cities hotel since February, and recently started looking for an apartment.
“They have basically no income,” said Brittani Kintzi, Rezac’s friend who is helping organize the event.
Aiva was about a year old when her mother started noticing something was wrong.
Aiva wasn’t vocal. She wasn’t crawling. She struggled to sit up, and even then she was hunched.
Doctors at the Mayo Clinic in Rochester eventually diagnosed Aiva with fucosidosis after a local neurologist failed to find answers. Rezac and her fiancé also decided to test their youngest daughter for the condition. What started as warning signs for one daughter became horrific diagnoses for two.
“We kind of prepared ourselves for it at that time,” Rezac said. “But at the same time I was super upset our kids don’t get the quality of life that they deserve.”
Fucosidosis is extremely rare. About 100 cases have been reported across the globe, according to the National Institutes of Health. Patients are typically diagnosed as an infant and struggle with intellectual disabilities and developmental delays, abnormal bone development and seizures. Symptoms grow worse with age.
Tatym received the transplant this year after a University of Minnesota doctor reached out to the family, believing the procedure could help.
She is just the third fucosidosis patient to receive a bone marrow transplant, but has struggled to recover from the procedure. Doctors continue to find blood in her lungs, and believe her respiratory problems stem from chemotherapy, Rezac said.
Rezac remains strong, even in the face of a condition that could steal away her daughters’ lives, Freeman said.
“Me being the aunt, I’m just a mess,” Freeman said. “She doesn’t really have a choice because she has to take care of her other kids, and you have to stay positive.”
An uncertain future looms over both girls and their parents as the treatments continue to drag on past the expected timeline.
“Nobody knows what to do,” Rezac said.
She isn’t the type of person to accept outside help, she said, but she’s increasingly open to the idea as complications and costs continue to mount. And she’s grateful to the community for its willingness to lend support as she focuses on spending as much time as possible with her daughters.
“I just want to cherish every day,” Rezac said. “Have good memories, even if it’s just us rolling a ball back and forth.”
Information from: Argus Leader, https://www.argusleader.com
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