Safiya’s Birthday Fundraiser!
My name is Safiya Kolovic and I have a rare metabolic disorder called Tyrosinemia. It was first detected with the newborn screening done at the hospital, shortly after I entered the world. Later, it was properly diagnosed after multiple tests were done.
This disorder caught my parents and entire extended family off guard because so little is known about it. Some of the possible symptoms are simply frightening! Luckily for me and many other children, screening for Tyrosinemia became a mandated part of the newborn test statewide starting on January 1st, 2012. At 5 months old, my parents made the decision to start giving me my “white milk” AKA specially formulated formula which helps regulate my levels. Every two weeks, my parents had to take me to get “pokes” and draw blood in order to know that my blood levels stable. Although getting poked so many times wasn't fun it helped the doctors know where my blood levels were and if anything needed to be changed in my diet. As I got older, my Daja (uncle) would reassure me that my blood was just extra special. This made it easier to have all those blood tests performed.
At times having this disorder feels scary!.
Once I was old enough to start having solid foods, my family needed to make sure to get low protein foods in order to keep my levels controlled. At times having this disorder feels scary!
It can feel isolating and hard but it just means we do things a little differently. With the help I get from my medical team and support from my parents/family/friends - I know I will be OK! Unfortunately, that isn’t the reality for many kids dealing with Tyrosinemia. They are often stuck with very limited and yet expensive medical/dietary options.
For my 11th birthday this year, my wish is to make it easier for those kids with Tyrosinemia to be able to get the medication and low protein foods they need. With the help of NOTA and my family/friends, I hope to make this wish come true. In lieu of a birthday gift, please consider supporting my fundraising idea and make someone else’s life a bit easier and a lot happier. Thank you!
