JOPLIN, Mo. – Local seven-year-old Chandler Venegoni recently had his wish granted by Make-A-Wish Foundation and Schuber Mitchell Homes. Chandler loves to be outside, but the Venegonis’ home had no outdoor shade and Chandler cannot regulate his body temperature.
“He’s a happy little boy. He loves to snuggle, he has the best little smile and pretty blue eyes. He loves to just watch TV, spend time outside, he loves to swing, be in water. Usually anything outdoors just makes him super happy,” said Chandler’s mother Alicia Venegoni.
Make-A-Wish and Schuber Mitchell came together to transform the Venegonis’ backyard by installing a gazebo to provide shade, extending their patio and gifting them a full-size daybed that will soon receive a mattress and be hung under the gazebo.
“We were very excited… We wanted something long-term that he could enjoy for a long time. It just feels very good to have that…” said Alicia. “It’s going to be so nice for him to be able to be in the shade and have a place to actually relax and lay down and be outside with us.”
The Venegonis applied for the wish last year and found out at the beginning of 2021 that the wish had been accepted. Since the family lives in a Schuber Mitchell home, Make-A-Wish reached out to the company which agreed to partner with Make-A-Wish to make the backyard remodeling happen.
“Make-A-Wish has been super easy to work with and they really got to know Chandler and our family, got to know what he likes and what he does. So it’s been nice how involved they get. And Schuber took so much time out of their busy work schedule to get guys out here to work on our yard and get things done,” said Alicia.
On top of Make-A-Wish and Schuber Mitchell’s contributions, a local doctor that Chandler’s dad works for donated a hot tub to the Venegonis to provide Chandler with year-round water therapy and relaxation.
The hot tub is currently in the Vengonis’ garage, but the next step is to move it to the backyard. They are currently seeking an electrician to connect the hot tub to the house. After this takes place, the Venegonis will be throwing Chandler a “Wish Reveal” party.
Chandler, born in Joplin, began having seizures after birth. He was flown to Children’s Mercy Hospital in Kansas City where he spent his first three months in the NICU. They then found out he had a rare genetic disorder called KCNQ2, which causes seizures and developmental delays. They also discovered that he suffered a brain injury at birth.
Chandler also has cerebral palsy, restrictive lung disease, and is fed with a J-tube. His heart rate and oxygen levels are monitored 24/7. A nurse helps care for Chandler four days a week.
“There are just lots of things that go into caring for him, he’s completely dependent on our care,” said Alicia.
Things have been challenging, even more so since Covid-19 hit.
“It’s definitely hard. We do feel very isolated at times, especially during this time with the pandemic… I’ve been home-bound with him for almost two years now… He hasn’t been able to go to school, get any therapy services or anything like that,” she continued. “Our family is a big support. Our church is a big support for us too.”