A whirlwind of emotions and a seemingly never-ending feeling of helplessness – that’s what the past 152 days have felt like for the Chabolla Family.
Five months ago, Aaron and Heather Chabolla checked into the Ronald McDonald House of Chapel Hill. They were scared, worried, and full of questions and uncertainties. Two days before arriving in Chapel Hill from Jacksonville, NC, the couple welcomed their fifth child, Roxy, to their family.
During one of Heather’s prenatal appointments, an ultrasound discovered a blockage in Roxy’s intestines. Doctors initially thought this would not be a long-term issue but as the pregnancy progressed, the more that hope diminished. Late in her pregnancy, Heather developed preeclampsia and cholestasis of the liver which led to an emergency C-section at 32 weeks. Roxy’s medical team discovered that she was born with a heart murmur, duplicated kidneys, and continued blockages of her intestines. The intestinal blockages required four surgeries, but despite the incredible efforts of Roxy’s doctors, the blockages kept returning. After numerous tests, Roxy was diagnosed with TTC7A, a rare genetic disease that causes inflammation of the intestines, bowel obstructions, immune dysfunction, and an inability to absorb nutrients. Roxy is the first infant in the state to be diagnosed with TTC7A and one of the very few in the world with the disease.
“Traumatic. Most babies do not live past a year with this mutation. You just feel helpless because you can’t do anything as a parent to help your child in a situation like this,” says Aaron. Fortunately, the Chabollas were notified about the Ronald McDonald House and how it could provide much needed support during this challenging time. “Everyone at the House was so welcoming. The level of care here is something we have never experienced anywhere else. It was also so nice to have the comforts of home just a few short miles from the hospital. Living in limbo isn’t easy, especially for 152 days, and RMH made life a little easier for us in that regard,” said Heather.
On February 10, over 5 months from the date they checked into RMHCH, Heather and Aaron headed home with Roxy in their arms. The Chabollas say Roxy is doing well, making strides in her treatment, and showing signs of normalcy in her daily life. Heather and Aaron have four other children they have barely seen over the past 5 months while they were by Roxy’s side. “Roxy gets to meet her siblings for the first time in her life, and that makes us so happy,” said Heather.