Karly Burkhart was only five months removed from treatment for Hodgkin lymphoma when she found out that her youngest son, Grant, was being diagnosed with FOXG1 syndrome, an ultrarare genetic disorder that affects less than 2,000 individuals worldwide.

Many children with FOXG1, sometimes referred to simply as "FOX", never speak properly. Furthermore, 70% of children with the syndrome never walk independently.

Grant and his older brother, Logan, live on a dairy farm in the Southern End with their parents, Burkhart and Troy Kirk. As you can imagine, making an old farmhouse handicapped-accessible will be no small, nor cheap, challenge for the family.

"It's a big fear of ours on how we're going to figure out how to get him around the farm and the rough terrain," Burkhart said. "This is our lifestyle, and we can't really change that. Figuring out how to adapt has been a difficult thing."

Grant struggles with severe development delays. His parents took him in for genetic testing after he was not hitting milestones that many kids his age were.

While his family is hopeful, there is a strong chance that Grant may never be able to live independently. His only chance of doing so is extensive physical therapy. Many individuals with the syndrome also have to eat out of a feeding tube.

Very little of what Grant will need to survive is covered by insurance.

"We just want what's best for him," Burkhart said. "We want to be able to provide the therapies that we can for him to get the most success that he can have for life."

A benefit lunch and silent auction will be held for Grant's family on Saturday, Aug. 1, from 11 a.m. to 3 p.m. at Little Britain Mennonite School, 352 Nottingham Road, Quarryville.

There will be a meal by donation consisting of a pulled pork sandwich, potatoes, macaroni salad, baked beans, a dessert and a drink. Southern Press Coffee will also have drinks available for purchase.

Many impressive items have already been donated for the auction, including a Blackstone grill, a KitchenAid mixer, a wine fridge, chainsaws, leaf blowers and Yeti coolers. A Facebook page showcasing some of the items can be found by searching "Grant Kirk's Benefit Lunch & Silent Auction" on the platform.

Individuals do not need to be present to win in the silent auction.

The benefit has been in the works for four or five months, but the idea is much older.

"A couple of our friends wanted to do something for us while I was going through cancer, to help pay for treatment," Burkhart said. "We didn't want to do that. Asking for help is hard, but once we figured out Grant's diagnosis, we knew it was going to take a lot."

Despite his struggles, Grant was described by his family as being the biggest bundle of joy, smiling from ear to ear with his big blue eyes wide.

"Grant is the happiest little boy," his mom said. "He has every right to be frustrated or upset, and he's not. ... He finds so much enjoyment in so much stuff and loves being around people."

Even before the benefit, the outreach from the local community and support for the benefit has shocked the family.

"We knew that a lot of people cared about Grant, and planning this benefit has really shown that love and support we felt from friends, family and the community already," Burkhart said.