Satarha-Lovley Webster is eight years old and battles the same genetic disorder as her mother: Von Hippel-Lindau (VHL) disease. This inherited condition causes cancerous or noncancerous tumors or cysts to form in the patient's body.
"We only found out she had VHL due to my genetic specialist," Lindsey Webster, Satarha-Lovley's mom, said. "We called our genetic specialist that was already set up and I asked if they could give her an MRI of her brain because I was concerned. So then in November, we found out she had an inch-size tumor attached to her brainstem."
Riley doctors operated on Satarha on December 15. Lindsey explained Satarha now requires the help of a trach to breathe due to the location of the tumor.
"This has just been a really long journey," Lindsey said. "We've been here three months, and we had to go through all the trach training and the vent training."
Fortunately, Satarha has an abundance of support between her parents and her extended family. Finally, after three months and inpatient stays on multiple floors throughout Riley, Satarha got to ring the bell and place her special butterfly on the wall of the inpatient rehab unit signifying the end of this chapter.
"I feel excited, but I also feel a little nervous," Lindsey said. "But I think we got it."
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