LANSING (WILX)-- Four-year-old Spencer VanBennekom has lived his life surrounded by doctors and medical professionals tending to his constant medical needs. Until now, his treatment in Grand Rapids was enough to sustain him.
Spencer was born with 22q syndrome, and has had problems eating since birth. This past year his stomach has gone into paralysis. After six major surgeries his condition has stumped all of the doctors that Michigan has to offer. Even his digestive tract has started rejecting food, so he gets all his nutrition through a tube to his heart.
"We cannot feed his intestines or stomach at this point. Anything he eats orally, because he's a four year old boy and he still wants to eat, is suctioned out," said Hope VanBennekom, Spencer's mom.
Spencer needs to be treated at a specialty clinic, at the Cincinnati Children's Hospital. His family has plans to go down in October, but they need help on the hard road ahead of them.
"It's difficult because it requires us to be away from home for weeks at a time. The travel expenses and lodging costs are starting to become too much," said VanBennekom.
Despite everything, Spencer and his family are positive with lots of hope that they'll find out how to fix what's wrong.
"Spencer is more than a sick kid. Spencer's a ball of energy, he knows how to push my buttons and then charm me at the same time. He's a flirt, and loves to say "hi" to everyone that he meets. He also loves hospitals, because that's all he's ever known," said VanBenekom.
If you want to help out, there's a fundraiser for Spencer and his family that's open to the public:
Spencer's Crummy Tummy Fund
When: Friday, Sept. 19th 6:30 - 8:00 pm
Location: Goldfish Swim School
5135 Times Square Dr Okemos, MI 48864
Bring cash and checks, plastic will not be accepted.
At the fundraiser there will be open swim, donated food from local businesses, popcorn and drinks. There will also be a "Quarter Race" at 6:30. Lillian (sister) and Kurt (dad) will be racing in a stroke of Lillian's choosing. Kurt must go 2 lengths of the pool to see if he can beat Lillian swimming 1 length of the pool. Drop a quarter in the bucket of the person you think will win the race! Lillian is Goldfish trained, so it will be a tough race for Kurt!
Can't attend and want to donate from a distance?
*There is a fund set-up at Michigan State University Federal Credit Union (MSUFCU) called "Spencer's Crummy Tummy Fund" that you can transfer donations to.
*You can also personal message "Spencers Crummy Tummy Fund" facebook page and get in contact with a SCTF Team Member who can give you mailing addresses for gift cards or checks.
(Find a link to the facebook page at the bottom of the story)
"If you look at everything he's gone through, He loves it ,cherishes it, and he goes through it with a smile. He's taught us more in his four years of life than most people can in their lifetime," said VanBennekom.