Making a Difference for Children and Adults With Down Syndrome

By Sue Baldani

When Jake and Ashlyn Burger of College Grove found out they were having a little girl last year, they were thrilled. Then, when they discovered she would have Down Syndrome, they were understandably shocked and confused.

“I was 10 weeks pregnant and we were so uneducated at that point,” says Ashlyn. “Most people think that if no one in their family has Down Syndrome, then they can’t have a child with Down Syndrome.”

She was also worried about how this diagnosis would change their family dynamic. Their son Brooks was only 2 years old. “Jake’s levelheadedness kept me calm because he just knew everything was going to be okay, which made me also believe that everything was going to be okay.”

Their family life was already a bit hectic and unconventional. Jake, a major league baseball player with the Texas Rangers, was away a lot during the season. “I thought, ‘Is she going to be able to go to baseball games with the family?’”

On October 25, 2024, Penelope Pearl Burger came into the world, and their lives have certainly changed. “She’s perfect just the way she is,” says Jake. “Every morning when she wakes up and sees either one of us, she gets the biggest smile on her face and it just warms our hearts. She’s also very sassy and she’ll let us know if she doesn’t like something.”

Big brother Brooks is very protective of his little sister. “No one’s allowed to hold her unless they ask his permission first,” says Ashlyn. “It’s been really incredible as a parent to see how your older child, especially a little boy, is just so protective of his little sister.”

While Penelope did have to have open heart surgery, the family has continued to do everything they used to do. “Having a second child is always an incredible transition. We take her to baseball games and she just sleeps through the later innings. I don’t know if she’s going to want to watch when she gets older since it apparently bores her now,” says Ashlyn, laughing.

Jake is the only active MLB player with a child with Down Syndrome. It’s important to the couple, who met in 2021 and were married in 2022, to let other families know that if their child gets a diagnosis of Down Syndrome, it’s not as scary as it might look or seem. “It’s been very special to have Penelope,” she says.  

Before and after Penelope’s birth, the support from the Rangers, friends, family, and the community was incredible. They want to make sure other families facing this diagnosis have this same support.

“After being blessed with Penelope, we have had a lot of access to resources that many people don’t have,” says Jake. “We kind of felt like there was a calling from God to use our platform for the greater good of the community.”

On March 21^st, World Down Syndrome Day, they announced The Burger Family Foundation, which is a College Grove-based organization that is focused on giving back to the community that’s been there for them and their family.

“It’s a two-pronged approach,” says Jake. “The first one is Pen’s Pearls, which will directly give back to the community monetarily. Whether that’s a family that needs help with therapy bills, medical bills, or maybe even a babysitter who specializes in caring for children with Down Syndrome. This way, parents can have some time to just be spouses to each other.”

Support may also include funding for education resources and camps, and basically anything else a family needs to improve their lives and those of their children. “For example, there are several entities that offer great special needs summer camps, and if a family needs help paying for the tuition, then we would love the opportunity to be able to put their child into that program,” says Jake.

The second goal of the foundation will be establishing The Lucky Ranch where children can obtain occupational, physical and other needed therapies. “The ranch will have all sorts of animals, different types of plants, and more,” he says. “We want it to be an oasis, in a sense, for families with children with Down Syndrome or adults with Down Syndrome.” The couple believes that being able to be outside and reconnect with nature is vitally important. “Brooks is always in a better mood when he’s been outside for a couple of hours during the day.”

Jake, who grew up playing baseball and once played for the Chicago White Sox and Miami Marlins, comes from a long line of turkey farmers on his father’s side. So, he truly understands how special it is to spend time outdoors. “I remember being on the family farm in Southern Indiana over the summers and it just felt awesome being outside and being with the animals. For me, this is a way I’m using my family’s history to help as many people as possible.”

The couple also hopes that the ranch serves as a place that can employ adults with Down Syndrome, autism, and other disabilities. “Whether that’s being a ranch hand on the farm, or working in a farm-to-table restaurant, we want to give them that opportunity,” he says.

The reaction to the announcement of The Burger Family Foundation has been extremely positive. “The Rangers have been incredible with trying to get us as much support as possible. It’s also been incredible seeing the love and support from not only the Down Syndrome community, but also from people all across the country.”

Donations can be made on its website, and people can also purchase apparel with Burger 21 on it. Jake chose to have a Rangers jersey with the number 21 in recognition of Trisomy 21, which is the extra chromosome that results in Down Syndrome.

For families and individuals needing help, there is an online application process, which can also be found on the website. “Like a traditional grant system, applications will go before a board and they will vote,” says Jake.

He adds, “We’re kind of standing on the shoulders of giants with Best Buddies, GiGi’s Playhouse, BrightStone, and The Brett Boyer Foundation, which are all these incredible organizations and foundations that have come before us.

Jake is thankful that Tennessee is very progressive when it comes to children with disabilities. “They have great early intervention services that they pay for, but sometimes there are things that are a little bit extra that are not covered by the state or by personal insurance.” Ashlyn explains that children with Down Syndrome have a high occurrence of certain medical issues, including congenital heart disease and hearing loss.

When Ashlyn speaks about what they’re doing and plan to do, she gets very emotional. “I see a different side than Jake gets to see because I’m sitting in the stands when he’s playing games. So many people come up to me and say thank you for being so vocal about how incredible our children are. I feel really blessed that God chose us to have this job and to have given us Penelope. It’s an unexpected beauty having a child with Down Syndrome – it’s a calling, not just a chromosome.”

BurgerFamilyFoundation.org

Written for Franklin Lifestyle magazine in Tennessee