* Macie’s first colonic reconstructive surgery was at birth.
* Her first open-heart surgery was at 3 months.
* Her major reconstructive surgery was at age 3.
* She has had over 8 major surgeries.
* She still has a pacemaker.
* She will have more surguries in the future.
Macie has VACTERL association with MURCS syndrome, which are two a very rare disorders that are collections are birth defects, where some organs are not properly formed and several internal organs are missing. In Macie’s case, her heart, gastro-intestinal, colonic, skeletal, and renal systems are affected.
Macie is 10 years old. From the outside, she looks perfectly normal. But 15 years ago, children with her syndromes did not survive. She is a miracle.
Life without major organs—and organs that are created by surgeons—is so difficult. Because of these problems, Macie is missing a lot of school. Outside of the family, her doctor, and the school nurse you would never know that she is often in pain.
There is no cure for VACTERL association with MURCS syndrome, but there are surgeries and programs to improve the condition.
Her multiple defects are so rare that only 8 children’s hospital in the U.S. have an intestinal rehabilitation program to help children like Macie live a more normal life.
The good news is that Macie has been accepted to a special program at Children’s Hospital in Cincinnati and needs to travel there with Mom by July 10.
The Colorectal Center at Cincinnati Children’s is the first and most comprehensive pediatric colorectal center in the world. Their surgeons and nurses collaborate with other pediatric specialists at Cincinnati Children's to provide truly multidisciplinary care for patients. Their week-long outpatient program has helped hundreds of children with colorectal conditions.
We expect most of the medical expenses to be covered, but the travel and outpatient costs are high in downtown Cincinnati. All the travel, meals, and hotel expenses for the 8 day stay need funding. The cost for both Macie and mom to get to the program will be about $8000.
Please contribute to this life-changer so that Macie can have a chance at normal life!
You may know
Mom Ericka Hatlestad Lile
Dad Kody Lile
Sister Sadie Lile
Brother Tyler Hatlestad
Grandma Katherine Garlough
Grandparents Gary and Marlene Lile
Any amount raised over the $8000 will be held for future surguries.
Hugs and thank you!