Despite rare disorder, local youth can still be a kid
There are many days and months throughout the year that are designated to promote awareness of health issues. There's Breast Cancer Awareness month in October, and Feb. 3 celebrates National Wear Red Day for American Heart month.
A month many may have not heard of before - or even realized was a problem with a segment of the population - is the recognition of Fatty Oxidation Disorder awareness for July.
It's a rare condition that one local parents wants others to understand can be deadly, but easily treated if found early.
Dalton Lane Brooks, a four- year- old boy who was diagnosed with the disorder just days after he was born and nearly died, is one local who has the disorder that's only found in 1 out of 10,000 newborns. Hi s mom Hannah Brooks said that with a better understanding of how the disorder works, her son is a happy and healthy young boy.
"It sounds scary and impossible to live with, but you adjust to what your perception of normal is,” Brooks said. “There will be hard times but it does get easier and when you see their smile, the multiple sleepless nights, multiple hospital visits, and the constant worry is all worth it.”
Essentially, Fatty Oxidation Disorder is a rare health condition that affects how a newborn breaks down fat ingested via breast milk or formula to get energy. A accident of genetic chance, the condition is caused by a defect in how metabolism breaks down fatty acids.
This can be particular- ly dangerous in the first few days in life if the parent does not know if the child has it yet, and they try breast feeding.
It is recommended by parents of children with the disorder that until you know the child is cleared and you get the results back one should bottle feed because you may run a risk of the baby not getting the right of nutrients and this can lead to damage of the child's brain and body or even death.
This is what threatened Dalton's life during his first few days, since his mom was breast feeding in the first couple of days of his life and didn't yet know about the disease. Though doctors were able to catch the disease early, Dalton did suffer damage to the left side of his body during the first few days of development and has since needed speech therapy, occupational therapy, and physical therapy.
He's since finished his speech and occupational therapy, but still needs help in a variety of ways. For instance, his parents have to keep up with his blood sugar whenever tired or sick, and has to keep eating to keep energy levels up. Brooks said her son has also been in the hospital a number of times for weeklong stays too.
But otherwise, Brooks said he's a normal kid.
He likes to play baseball, eats chicken nuggets and plain cheeseburgers, and soon will be starting pre-school with other students in August.
Though Brooks said her son isn't so excited to be heading to school since he likes to "stay home and play with mama."
For now, Brooks said she wants parents to be aware of the disorder and how it can affect their lives.