Local Family Learns Mission Of Riley

Brittny Moriarty would listen to families’ stories during WRSW Riley Radio Days on 107.3 FM and wonder how they managed.
Then when she and her husband, Zac, had Adalyn, now 4-1/2, she found out first hand and became one of the voices for the annual fundraiser for Riley Children’s Foundation and the Kosciusko County Riley Kids Fund at Kosciusko County Community Foundation.
The sixth annual Riley Radio Days runs from 6 a.m. to 7 p.m. Thursday and Friday.
“You always listen to the stories. I always remember, before I had (Adalyn), I was sitting at work, I was working at a factory job, and I was sitting there listening to these stories and I was like, ‘Man, that would just be horrible if that happened to us.’ And here we are, we are that family and it’s not horrible,” Brittny said. “You still listen and you’re touched by each story. You go home and think about those stories and you think about, ‘What if that was us? What would we do in those situations?’ And that’s what everyone always asks, ‘How do you do this?’ And that’s not even a question. It’s your kid and you just do what you have to do to give her what she needs.”
Adalyn was born at Kosciusko Community Hospital.
“She has a rare genetic disorder that we didn’t know about. So we spent the first month at Lutheran (Neonatal Intensive Care Unit),” Brittny recalled during an interview Monday morning.
Adalyn’s disorder is called Larsen-Like Syndrome. Her disorder is super rare and there’s only been four case studies of her type of syndrome, Brittny said. Zac and Brittny both have the recessive gene for Adalyn’s syndrome, which makes her case even rarer, because the syndrome is usually passed on through dominant genes.
“It’s a rare cartilage disorder. She was born with a bell-shaped chest, clubbed feet, both hips were dislocated and the palms of her hands were touching her wrists, so completely bent down. Her fingers were as flat as pancakes. But her biggest problem was that she couldn’t breathe very well, and that’s why we were in the NICU,” Brittny said.
Adalyn spent a month there before Lutheran ran out of resources for her. She was then transferred to Riley Hospital for Children in Indianapolis where she spent 4-1/2 months.
She was given a tracheotomy and a gastrostomy tube, also called a G-tube, was placed when she was 6 weeks old. A tracheotomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube. The G-tube is inserted through the abdomen and delivers nutrition directly to the stomach.
“Because if not, she would have died,” Brittny said. “Then we transferred to a unit to learn how to care for her. It’s called the Infant ICU, and it was just for trached kids only and their parents, to learn how to handle their extremely fragile new child and to bring them home.”
The unit set up nursing, medical equipment, feeding and other supplies for the Moriartys when they got home.
“They did all the training for us so we were comfortable with changing her trache, changing her G-tube, suctioning her, everything. It’s a very awesome unit,” she said.
A woman from the unit set up financial services for them so they would be covered under Medicaid and Adalyn would get Social Security disability. Brittny said that was a lifesaver for them.
Adalyn also has really bad Scoliosis, so she’s in riser casts that cover her entire torso. She’s been in those since she was 16 months old. Her casts are changed every six months or so, and Brittny said that’s helped Adalyn tremendously.
“Since she’s had the casts, we have gotten her trache out … and she’s able to fight off sicknesses easier,” she said.
While Adalyn was at Riley for 4-1/2 months, Zac had to come back home to work. The Riley Kids Fund provided gas cards for him to go back down to Indianapolis and for McDonald’s gift cards so the family could eat.
Good Samaritan Fund, through the K21 Health Foundation, made some house payments for the Moriarty family when Adalyn was in the hospital for long periods of time.
“We have made probably over 60 trips down there for appointments. We were just airlifted down there from Parkview Warsaw on Valentine’s Day, and then we made six ambulance trips down there,” Brittny said.
On Valentine’s Day, Adalyn had what would be a common cold for most people, but for her was “almost deathly sick,” Brittny said. “Our hospitals up here are just not equipped to handle her, or really any of our Riley Kids up here.”
The Riley Kids Fund helped them with all of those trips, either by providing gas and/or food cards.
Brittny said Adalyn’s long-range prognosis is, “She can not walk, so she is in a wheelchair. It’s a manual wheelchair that she can control with her hands, so that’s how she gets around. We go to a lot of therapy, trying to get her stronger, walking. She goes to Joe’s Kids here in Warsaw and in Goshen for therapy. That’s really her biggest thing, but she is smart. Really smart. And she is very determined to walk and to be able to do whatever she wants to do. She said she wants to be a doctor, just like Dr. (Shyan) Kishan, her orthopedic doctor.”
As for Adalyn’s personality, Brittny said she’s very sassy. She is really loud, and loves to play mommy and take care of her babies that are sick. She also enjoys playing doctor and is always on the go. She loves to tell stories and always wants to make a deal.
On Monday, Brittny said she was taking Adalyn to Fort Wayne to have surgery to close her G-tube. It was taken out last Sunday because it had been causing her problems.
“She’s been probably in the worst pain we’ve ever seen her in and it’s horrible,” Brittny said, noting that having the G-tube stitched up should be a simple procedure. If she is doing well by May, the G-tube can be kept out – but if she isn’t doing well, a new placement for a G-tube will be found.
The Riley Kids Fund and Riley Radio Days means a lot to the Moriarty family because how it has helped them and other families since the fund was founded in 2011 by Mike Bergen and Alan Alderfer. Both men have Riley children.
“We would probably be living with my parents still if we didn’t have the means to pay for my husband to drive down. He’d have to stay down there with me, probably would have lost his job. It gets expensive making that trip. It’s only 2-1/2 hours, but the gas adds up quickly, and four years ago gas wasn’t as cheap as it is now,” Brittny said. “So it’s very special and rewarding for us to be able to do this in order to pay it forward to other families who need it as well.”
Bergen said it’s the families that make Riley Radio Days a success. “We really appreciate Brittny and all of the other families taking the time to not only tell their story but to kind of relive their story, and it’s hard for a lot of them, to talk about what their kids have gone through and what Ady’s gone through. It really is, it’s as generous of an act as I’ve ever seen, as people take their time to talk about their own struggles for the benefit of others,” he said.
In 2016, Riley Radio Days raised over $70,000. To date, the KC Riley Kids Fund has raised over $550,000, with half going to the hospital to cover things insurance doesn’t cover, and the other half stays in Kosciusko County to help local families, mainly with gas and food cards.
To make a donation, stop by the radio station or make a credit card donation by calling 268-HOPE (4673).