As a parent, when your son or daughter is sick the one thing you’re always looking for is answers.
What’s wrong with my child?
What can I do to make him/her feel better?
Who do I turn to for the very best medical care?
These are the questions that were running through the head Selma Vereget as she searched for answers to what was ailing her daughter Ema.
“Beginning at 2 months old, Ema started vomiting and having frequent loose stools several times per day. She was also not gaining any weight and the doctors couldn’t tell us why,” explained Selma. “We spent a good deal of Ema’s first year in hospitals running tests and trying to come up with an answer.”
After two extensive stays at other St. Louis area hospitals, the Veregets realized that Ema’s care and symptoms were becoming increasingly complex. At that point, they decided to reach out to SSM Health Cardinal Glennon Children’s Hospital.
“We had heard great things about SSM Health Cardinal Glennon, so we were hoping that the third time would be the charm for us,” said Selma.
After extensive testing, the SLUCare physicians suggested that a genetic sequencing should be done on Ema’s DNA. And after several months of waiting for the results to be analyzed, Ema’s family finally had some answers.
Ema has a very rare genetic disorder that doesn’t even have a name yet, but is associated with the mutation of a gene responsible for the breakdown of fat. In fact, Ema’s diagnosis was so rare that she is one of eight children in the world to have this disorder.
“After the diagnosis, the staff at SSM Health Cardinal Glennon was very supportive,” explained Selma. “Because her condition was so rare, there simply wasn’t much information available regarding how to manage it, other than by maintaining a low-fat diet.”
Because Ema was still an infant at the time of diagnosis, she was given a fat-free formula that she was able to digest reasonably well. As she got a bit older, mealtime became much more challenging as Ema was a typical toddler – a picky eater who simply didn’t always want to eat what she should. At that point, the Veregets consulted with dieticians at SSM Health Cardinal Glennon to put a process in place for handling all things related to Ema’s diet.
“We have to constantly read food labels, measure out portions, document what foods she eats and how they affect her digestion, prepare all foods at home, and educate or remind family on what she can or can’t eat,” explained Selma.
While all this mealtime planning can be a time-consuming and challenging, Selma is happy to report that Ema is now eating well and thriving. She loves playing with her many dolls, swinging and sliding on her swing set, blowing bubbles, and playing with her grandparents and cousins.
“She is in the 90th percentile for weight… and I can’t tell you how much that means to us as she was not even on the growth chart much of her early life,” said Selma.
As for what advice she has for other parents who are asking themselves these same questions surrounding the illness of a child, Selma says that keeping a positive attitude is key.
“Never give up hope. Keep fighting for your child and be their biggest advocate. Try to always find the positive in any situation you are in and hope for a better tomorrow,” said Selma. “Lastly, always trust your parental instincts and trust the staff at Cardinal Glennon Children’s Hospital.”