For Makenzie Hardesty, 18, graduating high school was not something she always thought possible because of her rare terminal illness.
“She has mucopolysaccharidosis type VI it’s a rare disorder. It affects every part of the body from head to toe except for the brain which is nice because hers is the one that doesn’t really affect the brain too much. It does come with short stature,” Hardesty’s mom Andrea Souza said.
Hardesty was diagnosed with the disease at 4-years-old and at the time doctors predicted shew would only live to be 10.
Souza says there are now people with the same illness that are living to see their 40s, but for Makenize, the numbers are not scary.
“I just look at the people around me and stuff could be 10 times worse. I don’t let that affect me because I do stuff that I like to do and I don’t let my disorder get to me,” Hardesty said.
One of Hardesty’s younger sisters also has mucopolysaccharidosis type VI and both need tracheal tubes to breathe and enzyme treatments each week. Being the oldest of three, Hardesty’s knew she had to be strong.
“When I got to high school and had people looking up to me like my siblings I’m like hey I need to change my act because they are going to look up to me,” she said.
Crossing the stage at graduation was not a memory the family thought they would be able to make together.
“She’s been traced, numerous surgeries, carpal tunnel, spinal decompression with fusion, She’s had a lot going on but with lots of help from teachers, home nurses, home nurses we’ve made it,” her mom said.
When asked what she would say to others struggling, Hardesty said, “Even when you’re going through something you’re going to get through it like I am getting through it. I didn’t think I was going to get through it but I’m like hey I’m done, I passed a milestone. So if you’re fighting through something, you can make it.”