On the living room floor of an Indianapolis home, a group of people gather around to watch a little boy open presents. His older siblings happily rip them open for him while he watches, captivated. No one pays any attention to the discarded wrapping paper that litters the floor. It isn’t strange to anyone in the room that everyone is wearing shirts with Bill Murray’s face or ‘KCCO’ on them. There is only one thing that holds everyone’s attention, and it’s the tiny boy with red hair at the very center of their circle.
A couple years before this moment, Amber and Michael Darst were expecting their third child, a girl they planned on naming Megan. Although the pregnancy was healthy, there were complications towards the end which led to a cesarean. In the delivery room when there should have been sounds of newborn cries and congratulatory slaps on the back, a strange silence fell over the medical staff instead. They delicately informed the couple they in fact had a baby boy, and he had some serious issues. But no one could tell them what they were.
While the doctors tested their newborn son, the couple came up with a name: Colton Andrew. Then, there was nothing to do but wait. 12 grueling hours later a doctor came to inform the parents they had diagnosed their son with Arthrogryposis Multiplex Congenita, or AMC. This disorder is characterized by congenital joint contractions that cause muscle shortening and result in physical deformities.
What doctors found was that Colton had very typical symptoms of AMC in his legs. When he was born they were twisted and constricted like pretzels. Already in his short life he has had several surgeries on them, including three operations on his ankles and feet, a double hip surgery, and the removal of 1/2 inch from one of his femurs. We just found out that Colton will need this surgery, the removal of part of his femur bone, every year until he stops growing. Following each operation he has to wear a full-body cast for 6 weeks. On the horizon there are several more surgeries to his legs, with the hope that someday he might walk. That part is up to Colton.
His arms, however, are a different situation. Colton’s case is rare because for him, AMC affects all four of his limbs instead of just two. After nerve and genetic testing, doctors cannot determine why Colton can’t use his arms. They agree he will never be able to, which presents unforeseen difficulties for him. He is unable to do most things for himself and requires constant attention. Although what his future will look like still remains unclear, the family is more than happy to focus on the present. They have a talkative, smart, smiling little boy who loves for people to hold his hands and “help” him play. He loves to be active and swing or scoot around. Every day they watch in fascination as he learns and makes tremendous strides.
Then, in October of 2013, Michael Darst made a decision that would change his son’s life.
In an effort to expand his audience for a fundraiser to raise money for Colton’s medical expenses, Michael reached out to the notoriously charitable Chive Indy chapter. Once they heard about Colton’s journey, they jumped on board. The Chivers planned a mini meet-up that raised a not-so-mini $2,000. Since then, they’ve kept up with the Darst family and celebrated Colton’s milestones. But these do-gooders had a feeling there was more that could be done, so they reached out to Chive Charities.
At the time, the family car was a 2000 Saturn that could barely fit the kids and Colton’s necessary equipment. Every trip as a family of 5 meant concessions had to be made; important items had to be left behind. Chive Charities supplied a $59,000 grant for a 2014 Honda Odyssey EX with an ADA ramp. Now the family is able to travel safely together to cheer Colton through his future surgeries in Philadelphia.
After all of Colton’s presents were opened and the living room looked like the aftermath of a wrapping paper tornado, he couldn’t wait to test them out. On the driveway he whizzed around on his little car, giggling and smiling from ear-to-ear. Around him, his family (and the larger family that is made up of local Chivers) smiled too as they watched. They couldn’t help it, his joy was infectious.
When he tired himself out, Michael put Colton in his wheelchair and wheeled him back to their house. At the entrance to their front door it took a couple people to lift Colton’s wheelchair and carry him up the few steps onto the porch. Every time they leave the house with Colton this is the routine: carrying him up and down the stairs in his stroller or wheelchair. This is a constant inconvenience now, but it will become a real problem as Colton continues to grow.
So, the Darsts need a wheelchair ramp for their house, and we need your help to make that possible. Enter Chive Nation. We know what you’re capable of, so we’re setting the bar at $10,000.
You can donate RIGHT HERE.
UPDATE #1: We’re halfway to our goal in just under an hour!
UPDATE #2: We met our goal in two hours! Go Chive Nation!
We spoke to Colton’s family just after we hit the goal:
“Wow! It has brought tears to our eyes seeing so many people come together and help us to give Colton a better quality of life!”