Novaleigh has been in and out of Riley Children Hospital since she was born. The 9-month-old suffers from Atrial Septal Defect, ASD, also known as "hole in heart" and Mitochondrial Myopathy, MM, a rare disorder where the muscles do not have the ability to make energy. Doctors are unsure of the girl's future, but know she must have surgery. She has two holes in her heart between the two chambers, which causes her heart to work harder.
Kim Huffer, grandmother, said Nova has been through a lot and still has more to endure. Shortly after her birth, Nova spent a week in the Neonatal Intensive Care Unit for increased respirations and a decrease in amino acids. A month later, she was admitted for pneumonia and decreased oxygen levels. This was when Nova was diagnosed with ASD. Nova's lung pressure increased and she had difficulty breathing. Nova was given a muscle biopsy. Later, she tested positive for MM. Children with this disorder have an unforeseen outcome. Some can grow stronger in time to be a normal child, or some may end up confined to a wheelchair.
Huffer said Nova has a tracheotomy in her neck to breath and a gastrostomy tube, G-tube, placed in her belly for food. Nova can not laugh, make noise, or cry because of the trach. Huffer said if she gets excited her heart rate goes up, which sets the alarm off on the monitor she is hooked up to. Like most babies, Nova loves to sit in her bouncy seat, but can only stay in it for a little while because her heart rate increases.
Nova recently spent time in Riley's and was released on March 10. Huffer said the family placed the girl in the car and proceeded home from the hospital. Suddenly the child turned blue.
"We almost lost her," she said. "My daughter was screaming and, because of all the stuff they need to carry with Nova, they had to get past all of the stuff to help her. This is why I gave my daughter my Jeep, she needed a bigger vehicle."
When the family would travel with Nova, they would have two vehicles to hold all the stuff, so the Jeep provides more space and some peace of mind for Nova's mother. Huffer said the baby must have two people with her at all times.
When they leave, they pack two oxygen tanks, apnea monitor, ventilator and battery pack, ambu bag, which is for resuscitation, extra G-tube for feeding, saline, suction machine, extra trach for emergencies and the normal diaper bag.
Huffer said the family, including herself, had to be trained in the care of the child and received a form of respiratory therapy.
The expenses are adding up and Huffer said Nova's father works two jobs to help his family, but it is not enough to get them through. For now, the family lives in Indianapolis, but Huffer hopes to have her daughter back home soon, since Kahla is from Brazil.
Huffer said Abel and his mother are hosting a fundraiser for Nova and her family at Pizza Hut, 1591 E. National Ave., Brazil, May 15, from noon-8 p.m. After 4 p.m., there will be a live band, weather permitting, set up. Outside, there will be a variety of activities and inside, Huffer said there would be the silent auction. Pizza Hut will be placing vouchers in the Brazil Times, so when a person comes in to eat they present the voucher.
For every voucher presented, Pizza Hut will give 20 percent of sales. If a person doesn't want to purchase anything or take part in activities, Huffer said by bringing in the voucher they are helping.
Some of the items in the silent auction are dinner tickets to Texas Roadhouse, tickets for J.C. Penny Photo Studio and many more other related items. Huffer said many businesses have donated items.
For more information, call 443-4141.