As a baby, Brynn Connor developed normally until, at about nine months, her parents noticed that she hadn’t started crawling yet. Concerned, Kristen and Shawn Connor took her to a neurologist to find out if her delayed movement had an underlying cause.
Brynn was eventually diagnosed with Rett syndrome, a neural development disorder that exclusively affects girls. To help Brynn grow and maintain good nutrition, she uses a feeding tube to provide Nestlé Health Science Compleat® pediatric formula.
The Connors and their older daughter Taryn sat down with the Nestlé Health Science Connections program to talk about their personal journey with Rett syndrome and explain how they are helping with the search for a cure.
Helping Brynn at home
For the Connor family, the fight against Rett syndrome begins at home. “Our job is to keep Brynn as healthy as possible,” Kristen says. As part of that process, a feeding tube was placed in her abdomen so that Brynn’s parents could give her Compleat® pediatric formula because she wasn’t gaining enough weight. “She was 26 pounds at 18 months so we had the feeding tube put in,” said Kristen. Brynn uses the feeding tube at night in addition to oral eating during the day. After a year and 3 months on the feeding tube, Brynn has had positive weight gain.
Brynn’s Rett syndrome diagnosis was a real turning point for the Connor family. “About 8 months after she was diagnosed, I went to the Rett syndrome National Convention,” her father Shawn says. “I came home from that event and said, ‘We have to get involved.’” That’s when the family began to get involved in fundraising efforts for the cause.
Choosing a fundraiser
The Connors came up with the Happy Hour for HER, a cocktail hour that raises money to help find a cure for Rett syndrome. “The ‘HER’ has a dual meaning—Help End Rett, and it also raises awareness that only girls get Rett syndrome,” Shawn says. In the first year, the Connor family raised $38,000 for the cause. In the fourth year of the Happy Hour, they have raised over $85,000.
Fundraising for all ages
Brynn’s sister Taryn created an event aimed toward younger participants, called Brynn’s Beach Games, inspired by Brynn’s love for the beach. “After my Mom and Dad had their second fundraiser, I wanted to do something too,” Taryn says. The event featured a doughnut eating contest and other games and raised almost $3,000.
Hope for a cure
There is good reason to hope for progress in curing Rett syndrome because the gene that causes it, MECP2, was discovered in 1999. “Imagine someone walked up to a friend or family member who is affected by autism and said, ‘Oh, we know the cause. It’s this gene.’ They would be jumping for joy. That’s where we are with Rett syndrome,” Kristen says. “We’re almost there, now we just have to figure out the cure.”
Want to help find a cure for Rett syndrome?
Visit The Rett Syndrome Research Trust for more information.
Need help with your child’s feeding tube?
Get the information that can help you with your child’s feeding-tube journey.
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