Whitney Niece’s mom was left shocked after three of her boys were diagnosed with the same rare brain disease. Because of this, the children were forced to undergo a long operation, which eventually alleviated their condition. , however, not all three had a smooth road to recovery.
Three boys with the same disease
10-year-old Lincoln, 6-year-old Norrin and 3-year-old Remley began to gradually suffer from bizarre symptoms from 2022. All three suffered severe headaches and vomiting, as well as loss of balance and coordination. Although doctors initially thinking their symptoms were some kind of virus, they soon discovered the shocking truth. It turned out that the three boys suffered from a condition called Chiari malformation type 1, a condition that it occurs when the lower part of the brain pushes into the spinal canal, causing these troubling symptoms.
The 38-year-old mother stated that symptoms appeared in boys at different ages. “Remley’s diagnosis was unexpected because all prenatal tests were negative. Another shock was Lincoln’s diagnosis, which made me wonder about the chances of having two children with the same disease. Based on the symptoms, I am she suspected that Norrin might have it too. However, I did not expect that all three would have the same disease,” she said.
Their symptoms appeared gradually
To little Remley diagnosed with this disease in June 2022 after he stopped urinating and an MRI accidentally revealed the malformation. On the contrary, Lincoln’s illness was discovered in February 2023 after he was a doctor he noticed that his pupils were not the same size. Finally in December 2023, after three months of battling headaches, Norrin was diagnosed with the same disease.
Malformations are usually caused by genetic mutations that manifest themselves during the development of the child in the womb. Although the diagnosis was not life-threatening, it led to several hospital stays, including undergoing decompression surgeries to relieve symptoms. This procedure it involves removing a small piece of bone from the base of the skull or the top of the spineto reduce pressure on the brain, allowing normal flow of fluid in the brain and spinal cord.
The treatment was not easy
Whitney though she added that the treatment of her sons was not easy at all. “In March 2023, Lincoln underwent decompression surgery and fortunately, he was released from the hospital after three days“, she clarified.
At the same time, also at Remley’s began to show symptoms, prompting his neurosurgeon to request further tests to see if he too needed surgery. “He was decompressed in August, but already 10 days later there was a leak of cerebrospinal fluid,” she noted, adding that A 3-year-old boy needed emergency surgery to insert an external ventricular drain. Ide o a thin plastic tube that helps drain excess fluid from the brain.
“Meanwhile Norrin too he began to complain of frequent headaches. In January 2024, they also performed decompression surgery on him, while he had to face the same consequences as Remley” continued the 38-year-old mother.
Whitney says that although her sons’ health problems were difficult for her and her 41-year-old husband Ron, the situation gradually began to calm down. “Financially, we felt overwhelmed as we tried to juggle taking care of our children and work. Fortunately, things have calmed down a lot since then. Although we still struggle with headaches, now they can be managed with the help of medicine“, she assured.
