FORT WAYNE, Ind. (WANE) – Donating a $20,000-$25,000 patio may not seem like the best business plan, but a local company calls it a no-brainer. Partnering with the Make-A-Wish Foundation, Raber Patio out of Shipshewana made that generous gift Wednesday to a very special Fort Wayne girl.
Raber got connected with the Houser family a few months ago. They knew they wanted to make the wish for their two-year-old daughter, Addyson, one she could use all of the time. After interviewing several possible companies, the Housers said Raber stuck out the most. For the team at Raber, this isn’t just a one day project. They intend to keep up with the family and check on Addyson in the years to come.
“We’re just the tool that helps her journey become better in her life, basically trying to create a new world for Addyson to step in to and enjoy the outdoors,” Raber Patio president Chris Schlabach said. “We want to give God the honor and glory for all this because he put us in this spot to see what we would make of the situation. So, all we’re doing is fulfilling God’s will.”
Addyson wasn’t even supposed to experience one bit of life. Her parents were told she would be stillborn.
“She’s our gift from God,” Addyson’s mom Ronda Houser said.
Doctors didn’t expect Addyson to make it out of the womb, let alone celebrate her third birthday this Easter Sunday.
“We did not make those choices. She made the choices to be here. She breathed on her own with no help. She’s strong,” Houser said.
That determination is key to overcoming each and every obstacle life’s brought her way.
“She has Oculo-Auriculo-Fronto-Nasal Syndrome,” Houser said. “Oculo is for the eyes. Auriculo is for the ears. Fronto is for the front of the face. Nasal is for the nose. Everything that has gone wrong has possibly gone wrong inside of her head, but yet she’s healthy from the neck on down. She wasn’t supposed to be able to do anything, any kind of movement, any kind of anything. She has hydrocephalus, so she has a programmable shunt in her head. It has affected her cognitive ability. So, she is challenged. But, she does very well for herself.”
Her condition makes it difficult to do many things most toddlers take for granted, like playing outside.
“Our failed trips to the front porch weren’t going the way we anticipated. The breeze was too much for her trach to handle. The sunlight was too heavy for her eyes. It would hit her in the eyes, and she would squint and turn her head,” Houser said.
This simple three season room will make a major difference. Addyson will get to do occupational and physical therapy out in the space as well as play with her friends and family.
“Pretty much her life for her first three years has been going to the car, going to Riley, going to Grandma’s for occasional visits, getting out of the car, getting in to the house, and basically living here. So, this is going to give her a whole other space,” Houser said.
There are only 30 documented cases like Addyson’s around the world.
“It’s just a mutation that happened. It’s actually unexplainable why or how this happened. Nobody knows yet. She has 13 doctors that pretty much oversee everything with her care,” Houser said.
With 17 procedures, she holds the record for the most surgeries for a child her age at Riley Hospital for Children. She was born without eyelids, eyelashes, or a nose. All of the surgeries have worked to correct that. She’s scheduled for another surgery in July.
“We thought we’re kind of alone in this world and you’re like nobody has a child like her. Then, I started learning when I go to Riley, there’s a lot of people with children maybe not exactly like mine, but there’s a lot of people kind of walking our shoes, as well. It depends how you wear those shoes is how it’s going to pan out for you,” Houser said. “She’s a lot of care 24/7. I sleep on a couch in the other room. I don’t leave her from one floor to the other.”
Those requirements hardly qualify her as a burden, but rather life’s biggest blessing.
“She’s happy every day. She loves life more than anybody that I know. She finds so much happiness and joy in everything she does. We don’t know what tomorrow brings. We don’t know what next month brings. We don’t know what a year from now brings. We look at is gosh we have another day. We have another month. We got three years,” Houser said.
To read more about Addyson’s journey, click here.