PERRY COUNTY, Pa.– For Ben Zerance and his wife Julia, spending time as a family has been difficult over the last four years.
Ben tells us, “It is definitely hard for Julia and I not being able to be at the hospital and at home.”
The youngest of their kids Avielle, has basically spent her entire life in and out of the hospital, which isn’t easy emotionally or financially for the family.
So, one Perry County man is now calling on the community to help make the Zerance family’s holiday a little brighter.
Kevin Kolak has been doing a light show in his front yard for 7 years, and there is one thing he looks for each year, “The smile… the smile is worth everything.”
People come from all over Central Pennsylvania to see the show.
Kevin’s holiday light show is so much more than just a gift for spectators as money donated is a gift he gets to give to a local family who could use a little help this holiday season, which is surely something to celebrate.
This year, Kevin’s show will benefit Avielle Zerance and her family.
“It’s emotional, it really is because this can make a difference for the Zerances.”
Enjoying the light show was one of the happy times for Avielle, but it’s not always happy times for Avielle and her family.
Her mom, Julia says, “She ended up getting sick on Thanksgiving this year.”
Avielle and her parents have grown accustomed to her frequent hospital visits—as they started when Avielle was too young to remember.
She was diagnosed with biliary atresia at just 3 weeks old.
Ben says, “Her liver was not able to drain into her intestines and help with digestion of the foods and also getting rid of the bile.”
When Avielle was 8 months old, the terrifying word “transplant” became part of the family’s regular vocabulary.
Julia found out she was a match to donate a lobe of her liver to Avielle when she was 12 months old.
Julia saying she didn't even have to think about it, “Yeah it was a no brainer, yeah.”
Ben says having a living donor, and it being Avielle's own mother was a relief, “Knowing that that was available kind of eased… eased our minds.”
Ease their minds maybe, take the weight off their hearts and their wallets—not a chance.
After the transplant, Avielle developed a form of Lymphoma—Post-transplant lymphoproliferative disorder, or PTLD.
Julia says, “For PTLD she did 6 months of chemotherapy at CHOP. We did that weekly.”
While Avielle is cancer free that doesn’t mean she is free of other complications. In September, she underwent bile duct reconstruction surgery. She continues to have regular specialty appointments at the hospital. Because she has a weak immune system, a simple sinus infection would send Avielle and the Zerance family back to the hospital.
Through it all—Avielle’s spirit never falters, the smile never fades.
Ben says they hope for the long stretches where they go without an illnesses, which would provide a little normalcy to the family, “We just take it day by day… and each time, you do what you have to do.”
It is times like this, where they can enjoy the show, that allow the Zerance family to be just that-- A family.
Ben says leaning on their faith has been a tremendous help. “We have a lot of faith in God and I think he has helped us through things a lot.”
A Christmas wish from the family? Julia says she just hopes Avielle would be healthy, “A healthy 2018, that would be nice.”
Kevin understands the family's struggle, “Man, these—cut them a break, they need a break.”
That break may just come from the generosity of others, making the Zerance family’s holiday a little more merry and bright.
Avielle says, “Thank you.”
For more information on the Kolak Christmas light show visit his website:
If you want to help the Zerance family and cannot make it out to Perry County, you can mail a check written to Kevin Kolak-- Put "Avielle Zerance" in the memo to:
1976 Shermans Valley Road, Elliottsburg, PA 17024