When her son, Alec, was six years old, Tereza began to notice that his health was deteriorating. He developed a lazy eye, behavioral issues cropped up, and he began to stutter.
She made appointments with medical professionals, but “the doctors didn’t listen to us,” she said. He lost the ability to read and write due to vision issues, and he stopped walking and talking, which spurred the eventual diagnosis.
By then, his genetic disorder, cerebral ALD (adrenoleukodystrophy), had caused irreversible damage that could have been prevented if it had been caught in time. Luckily, a bone marrow transplant saved Alec’s life. Now 9, Alec can no longer talk, but he can vocalize to express happiness, sadness, and discomfort. He can turn his head and move his arms, although he can’t grab things. He attends school in a special needs classroom, which he loves. His mother has become his full-time caregiver, never returning to work once the genetic illness was uncovered.
“Our world was flipped upside down when he was diagnosed,” she noted.
Since then, Alec’s needs have been substantial. Because he could no longer eat normally, a dietician recommended an $800 specialized blender to liquefy his food. In addition, home exercise equipment was required to help him address his varied physical issues. The family turned to the Kathi Koll Foundation for assistance at the recommendation of Ronald McDonald House and received a $1,500 Amazon gift card.
“Oh my gosh, it was so helpful,” Tereza said. “I was able to get Alec all kinds of things that he could use. It helped financially, but it also helped emotionally to know that there were people out there blessing people like us. To be remembered and thought of was the even greater gift.”
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