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Three Lakes student back at school after battling rare disease Submitted: 02/21/2018
Phylicia Ashley
Phylicia Ashley
Reporter/Anchor
pashley@wjfw.com

Three Lakes student back at school after battling rare disease
THREE LAKES - Getting diagnosed with a rare disease can be a scary, isolating feeling. A Three Lakes girl and her mother don't view it that way, they want to show the disease doesn't define 11- year- old Ada.
"It came out of the blue you have a child and don't know you're going to encounter that," said Ada's mother Jennifer West.
Jennifer knew something was different when her two year old daughter was shrinking in size and had bowed legs.

"[It was] a turning point in my life as a mom," said Jennifer.
It took nearly 12 specialists to diagnose Ada with XL- Hypophosphatemia, a form of rickets. The genetic disorder that affects one in 20,000 people.
"It's kind of like finding a needle in the haystack and I found out I'm the needle," said Ada.
Ada's body can't properly handle phosphorus, making her bones soft and her figure smaller. That's led to dozens of doctor's appointments and a surgery last week. 


 "When my mom says there's a doctor's appointment coming up I'm kind of used to that," said Ada.
Wednesday, Ada needed to get used to something else. She returned to school for the first time since her operation. 

"It's just a part of my life but it's not the biggest part. I'm lucky to be who I am," said Ada.
The girl with a strong heart but weak bones feels lucky despite the low odds that set her apart.
"I just want her to be a caring good person, all the other stuff is irrelevant ," said Jennifer.
Ada wants other people with rare diseases to know they're not alone.
"If you have something like I do it's not the end of the world because people can help and you're not by yourself," said Ada. 

Next week Three Lakes School District will celebrate Rare Disease Day. It gives students a chance to learn about a disease like Ada's.



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