Brandi Meszaros doesn’t know if the next cold or fever will end her daughter’s life.
“Every fever could be her last,” Meszaros said. “Zoe has anhidrosis. She physically can’t sweat and will continue to overheat.
“When that happens she ends up in the hospital on fluids to replace fluids her body is losing. Otherwise, she could end up with brain damage, seizures or possibly death.”
Anhidrosis is just one of a range of symptoms that have plagued Zoe, 6, since she was just 26 months old. It began with a diagnosis of microcephaly, a rare neurological condition that affects brain growth.
During the past five years, Zoe’s head circumference has only grown by one centimetre. Her overall development is that of a three-and-a-half year old.
The older Zoe gets, the bigger the deficit becomes. Other conditions exhibited by Zoe include seizures, an eating disorder called pica that results in cravings to eat non-food items and an inability to handle extreme cold.
“Her body temperature will drop too quickly if the temperature is below minus-five degrees,” Meszaros said.
But physicians and geneticists have been unable to pinpoint an exact medical condition to explain all of Zoe’s health problems.
“The theory now is that she had a dormant version of whatever this is and it needed a trigger,” Meszaros said.
Meszaros believes that trigger may have been a vaccination Zoe received as a baby.
“There is a possibility that a vaccine actually triggered it because the same week that she had her first vaccine her brain growth slowed,” Meszaros said. “The only thing they have been able to find is that she has a possible chromosome translocation, but they don’t know which chromosome was translocated.”
After countless examinations, including MRIs, EEGs and range of genetic tests that were inconclusive, Meszaros is doing everything in her power to raise $4,000 for a test that might finally pinpoint the cause of Zoe’s symptoms.
“The whole genome sequencing test will potentially tell us what Zoe has,” Meszaros said. “This test is my daughter’s best hope at receiving a diagnosis. She was not born with microcephaly and was actually perfectly healthy at birth.”
Meszaros fears her younger children, aged two and four, could have the same, dormant condition and has opted not to vaccinate them until it is ruled out.
“I would honestly feel more guilty giving them a vaccine and releasing Zoe’s condition in my typically developing, healthy children than have them get measles or meningitis and overcome it,” she said.
Whole genome sequencing can also determine if her younger children are affected and if Meszaros or her ex-husband passed on the condition. The test is not covered by OHIP.
“This opportunity is huge for us,” Meszaros said. “It can diagnose her and it can tell us if the other two children have the same condition laying dormant or if they are carriers and can pass it on to their children and, if they are, how we can treat them and what therapies to give them.
“A diagnosis can open Zoe up to new therapies and treatments that can extend her quality of life. This is Zoe’s best shot at an answer. Now we’re reaching out for help.”
People can help by donating to Michael and Brandi Meszaros in trust to transit No. 2194, account No. 6072943 at any TD Canada Trust branch, by visiting Zoe’s website at www.zoemeszaros.com or logging on to Facebook and searching “fundraising for genetic testing for Zoe.”