Eleven-year-old Ava Acker's life has become a flurry of pain, pills and procedures ... migraines, missed foods and multiple doctor appointments.
"I don't like that I have to miss certain things for other things and I don't like that I have to see doctors a lot and I love my doctors, but nobody likes going to the doctor's office. I don't like that I get poked and prodded a lot, that I have to take a lot of pills 'cause those pills can make me nautious sometimes," says Acker.
The New Hartford pre-teen is the youth ambassador for this year's Take Steps Walk for Crohn's and Colitis. Her disease began to show its face in the most unlikely of ways, three years ago.
"We first knew something was wrong when Ava kept having recurring chapped lips on and off for about two years," said Acker's mother, Debra Acker, an RN. "Your digestive system starts with your mouth, so the chapped lips were an early indicator for disease."
The symptoms would become more severe....and more telling.
"Bloody diarrhea, watery diarrhea, joint pain, joint swelling, fevers, sores in their mouth, belly pain, which is pretty common," said Dr. Prakeet Wali, MD, of Upstate University Hospital. "Autoimmune disorders are when your body's immune system gets confused and starts attacking its own organ. So other autoimmune disorders are like diabetes, thyroiditis."
Next, came treatment after treatment after treatment; Ava, her family and doctors hanging their hopes on each new one, only to have those hopes dashed, as each treatment would only provide temporary relief.
"So, she started out on oral treatments and she maxed our on those; her body couldn't process the drugs anymore," said Debra Acker. "Then she moved to infusion therapy. Her first infusion therapy failed her.......then she went on injections, on weekly injections, and did not do well with those and she's on her third medication, another infusion therapy that she gets every month."
Ava gets infusions at Upstate Golisano Children's Hospital, in Syracuse.
"The infusions sometimes give me migraines and it can be very hard when I'm waiting," said Ava. "The infusions, I'm pretty sure that they help, but not enough."
"The drugs fail them. It's not them failing the drugs. The drugs fail them. And so, if multiple drugs do fail, then we just go to the next one and we try to get to a point where we get into remission," said Dr. Wali.
Two hundred children are currently being treated for Crohn's and ulcerative colitis at Upstate. Dr. Wali says they have an 85% remission rate for children who take part in a collaborative with 110 other hospitals, where information, like succesful and unsuccesful treatments, are shared.
"People often say, 'she looks great! She doesn't look sick!' But most of the time, people don't understand that kids like Ava suffer in silence," says Debra Acker.
The bright side throughout Ava's journey has been the support, love and understanding of her family and friends.
"My friends in my classrooms are very big supporters of me, the ones that know. And they don't see me any different."
A point of pride-Ava has been chosen as this year's youth ambassador for this weekend's Take Steps walk-a fundraiser for Crohn's & Colitis research.
"My mom and me were just so shocked. We were so happy. My mom was so surprised and we were so honored.....as the youth ambassador, I have responsiblitlies to show what it's like to be a kid with Crohn's," said Ava. "The walk is just about letting people know that people are out there with sicknesses and it's not just adults, it's children, too."
Ava's doctor hopes a cure will be found in her lifetime.
"The amount of research that's being dedicated, I would say that's a clear possibility. And that's why these walks and runs are important, because the more funding that you have for research, the more likely there is to be a cure."
To register for the Utica Take Steps Walk, or to donate to the cause, click here.