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Fundraiser for boy with rare condition

Updated: Tuesday, May 13, 2014 |
Fundraiser for boy with rare condition story image
MARSHALL, Mich. (NEWSCHANNEL 3) - A West Michigan family is trying to raise awareness to a very rare condition while also improving the quality of life for their own son.

The Peters family from Marshall is struggling to keep their young son in their house.

Right now it's not accessible for his wheelchair and they fear if they don't get help making improvements he may not be able to stay there much longer.

9-year-old Simon Peters was born with Pallister-Killian Syndrome or PKS.

It is an extremely rare chromosome disorder.

He is one of only 300 known cases in the world right now.

Simon cannot walk, talk or even sit up, but he has a smile that lights up the room.

His family is in desperate need of more space for Simon.

Right now their only bathtub is upstairs, so is Simon's bedroom, and his wheelchair does not fit in their house.

His family has been working for 2 years to raise enough money to rehab part of their home.

Last week a friend started a "Go-Fund Me" page and in just days raised $11,000.

They still need some more to reach their goal, but say this is a start to keep Simon in their home and give him a better life.
    
"If we can't get the addition, maybe not now but eventually we're not going to be able to keep Simon at home with us and that's a big fear," said Gretchen Peters, Simon's mom. "It's just going to make his life, it's going to open his life because he's going to have the accessibility he needs to enjoy things and to move around and do things his way instead of him adapting to our world."

The Peters family also hopes to raise awareness to PKS in hopes of helping other kids with the disease, since so little is known about it.

If you would like more information on Simon's story or want to help the family you can visit their website here.
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