Believe in Brynn: Penn field hockey is building family to fight Rett Syndrome

Every year, Brynn Connor looks forward to the day when she can be Penn field hockey’s honorary captain, and you can see the pride in her face as she leads the team onto the field. She feels like a part of the team because she is a part of the team — a team that believes in her. The sense of family that the group creates for her makes the 11-year-old feel like another one of the girls. She is Brynn, number 00 for Penn field hockey.

Brynn Connor was born on July 8, 2011 to Shawn and Kristen Connor. For months, she appeared to be a happy and healthy child, hitting milestones like sitting up and blowing strawberries at six months. But soon Shawn and Kristen noticed she was not making efforts to crawl or babble. They took her to various specialists, but doctors were unable to tell them what could be causing her delays.

“We had all kinds of tests done on her, and everything came back negative,” Shawn said. “I thought it was just a bump in the road and they were going to figure out what was causing these delays, and we were going to go about our lives.”

However, in October of 2013, a 2-year-old Brynn sat in the backseat of the car as Kristen picked up the phone to receive news that would change their lives forever: Brynn was positive for Rett Syndrome. 

Rett Syndrome is a rare genetic neurological disorder, primarily in girls, that impairs the development of motor skills, including walking and talking caused by a mutation in the MECP2 gene. It is estimated that about 1 in 10,000 girls are born with Rett, meaning that there are only about 15,000 cases in the United States, and 350,000 worldwide.

“Rett Syndrome is pretty underpublicized, and there’s a general lack of awareness,” Shawn said. “We went into this cocoon, in the sense that we didn’t tell anybody about Brynn’s diagnosis other than our immediate family. We didn’t know about the positivity of Rett at the time, so it took us about five months to wrap our heads around it.”

On Feb. 15, 2014, Shawn and Kristen announced Brynn's diagnosis to the world.

“In a message, we said that Brynn’s diagnosis wasn’t going to change. But we made it clear that we were going to love her the same way,” Shawn said. “From that point forward, we were joining the fight for Rett Syndrome and were going to become advocates for raising awareness and research funding.”

From there, the couple started their Believe in Brynn campaign on social media, promoting Rett Syndrome awareness and raising funds for research to find a cure. 

During this time, Brynn’s story struck a chord with an old friend of Shawn and Kristen: Penn field hockey coach Colleen Fink. Shawn, Kristen, and Fink went to St. Joseph’s University together, but had lost contact over the years. When Fink saw the announcements on Facebook, she decided to reach out to the Connors and offer help.

“Before Brynn was diagnosed with Rett Syndrome, I had never heard of it,” Fink said. “I thought it was especially interesting that Rett specifically affects girls, and I have always been passionate about being an advocate for women’s issues. So, I think that it’s important that women know that this is something that affects many families, but especially the women’s community.”

Fink invited the Connors to visit the Penn field hockey team, and during Easter of 2016, Brynn had her first opportunity to meet her new family.

“We came down and we introduced our family, and the girls got to meet Brynn. They could not have been nicer, more accepting, or accommodating. And ever since that day, we go to as many games as possible,” Shawn said. “Every year, we have an annual fundraiser in October, and we typically have four to five players from the team who volunteer their time to do administrative jobs. 

“All in all, it’s been a positive relationship that we’re very thankful for.”

For the past seven seasons, Penn field hockey has remained close with Brynn and the Connor family, inviting them to team banquets, preseason practices, and barbecues. The team also hosts the annual Believe in Brynn game, which took place this year on Oct. 2; a 2-0 victory over Long Island University. 

Due to inclement weather this year, Brynn’s loving older sister, Taryn, represented her for the team’s introduction. Brynn still got to watch the team from home, though, as she wore her #00 jersey, and you will see her in the crowd with her jersey for most home games with her family by her side, as they support the Quakers.

“At the end of the day, when people assess our program, they might base all of our successes on wins and losses. They might say we haven’t won that many games this year. However, I would also offer to assess it in other ways, and I think Brynn is one of those ways,” Fink said. “The impact that Brynn and the Connors have had on the team, and the impact that the girls have had on her goes beyond wins and losses. Sometimes it’s not just about what we do on the field, but also what we try to do off the field, and Brynn is a very important part of what we do off the field.”

Brynn’s fight against Rett Syndrome continues today, as doctors are still searching for a cure. Shawn and Kristen were told in their first meeting with Dr. Eric Marsh of the Children’s Hospital of Philadelphia that Rett Syndrome would be cured during Brynn’s lifetime, and that has been motivation for the family ever since. 

This Saturday, Oct. 15, the Connor family keeps their promise of fighting to find the cure for Rett, as they host the seventh Annual Happy Hour to Help End Rett in Philadelphia.

To join Brynn and the Penn field hockey team in the fight to find a cure for Rett Syndrome, visit the Believe in Brynn Facebook or Instagram pages. To make a donation or buy tickets for the Happy Hour to Help End Rett, you can visit https://reverserett.org/events/happy-hour-to-help-end-rett/.