Siouxland family raises awareness and funds for rare disorder - KTIV News 4 Sioux City IA: News, Weather and Sports

Siouxland family raises awareness and funds for rare disorder

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SIOUX CITY (KTIV) -

At just 11 years old Lincoln Wheelock is dealing with a rare disorder called Fibrodysplasia Ossificans Progressiva that causes him to grow extra bones. 

Anytime Lincoln gets hurt or has inflammations, he's at risk to grow extra bones. 

"Basically, it is a condition where the, when the body is damaged, bruised, any type of inflammation, the body wants to turn that tissue, muscle, tendon and such into bone. And, the eventual outcome is total immobilization" says Doug Wheelock, Lincoln's Grandfather.

FOP is so rare-  Wheelock says only 1 in 2 million people born have it.

Lincoln was diagnosed when he was 2. 

Now, his grandparents are helping to make sure there's research done for the disorder that currently has no cure.

"When we got over the shock, we thought, well this is what we have to do. So, we have created an event which includes a dinner and a prize drawing and a silent auction. Also, some education from Dr. Fred Kaplan is coming from Philadelphia. And, It's a fundraiser where everybody can participate" says Marilyn Wheelock

Lincoln's Legacy was created so that other families going through the same thing can have hope. 

The Wheelock's have benefits to raise money. 

100% of the money they raise goes directly towards research of FOP. 

"FOP is an orphan disease and so it gets only a fraction of research dollars. And, the FOP research relies heavily, like 70% of their budget on family fundraisers like we're doing with Lincoln's Legacy" says Doug Wheelock. 

The Wheelock's say the support they've had since Lincoln was diagnosed with FOP has been overwhelming. 

"I suggested that he write a thank you letter to the people who have been doing all this help. So, basically at the very end he says 'thank you everybody for your efforts, it means the world to me' and that just made me cry when I heard that" says Doug Wheelock.

The Wheelock's say there has been advancements in research for FOP since Lincoln was diagnosed. 

Lincoln's Legacy will have a benefit Friday August 18th at the Sunnybrook Community Church in Sioux City. 

Doors will open at 5 o'clock. 

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