11 Mar Defying All Odds

Posted at 13:44h in Families, Our Stories by

Eden Holly has been defying the odds since she was born. Hailing from Joplin, Mo., Holly was diagnosed with Edwards syndrome, a chromosomal condition also called trisomy 18, a week after she was born. After the diagnosis, doctors only gave her two weeks to live. 

“At 2 weeks she came off the ventilator and then they gave her one month to live. At the month mark, she was discharged from the NICU at that hospital,” said Samantha. At almost 2 months old, she had her first heart surgery in St. Louis at just 4 lbs.

Eden, Samantha and the rest of the Holly family came to Kansas City for her care in 2012 and decided to remain here for all her needs, as their hometown didn’t have specialists that could help her. That’s when she was introduced to the Ronald McDonald Houses in Kansas City.

The Holly family spent quite a bit of time in ALL of the Houses in Kansas City with the various infections and complications Eden has had over the years. When things were serious and she was in the PICU, they also used the Ronald McDonald Family Room inside the hospital. They feel at home in the Ronald McDonald Houses.

“We are happy when Eden is well enough to leave, but we never want to leave. The Houses there make you feel more loved and appreciated than anywhere else we have ever been. The staff and the families in the Houses are like our family,” said Samantha.  

Eden’s big brother, Elliot, and little brother Ezra have been able to come up with his parents often and love the Houses. Ezra loves shopping for groceries and doing all the activities available. The family absolutely loves our therapy dogs, as well!

“I laid on the floor with Jay, he reminds me of our dog back home – except he’s much calmer,” Samantha joked. 

And he’s not the only staff member their family feels close to and comfortable with. 

“They call you by name, check up on you and your kid, always asking how we are doing. We are always sad to leave our home away from home,” said Samantha.

And Ronald McDonald House in Kansas City will always be here, welcoming the Holly family with open arms when they need us.