Fundraiser will help sisters who share a rare genetic disorder
Serenity and Kaylee Trezis are happy little girls who’ve been dealt a tough hand. The sisters have both been diagnosed with a rare genetic disorder called congenital disorders of glycosylation, also known as CDG type 1a.
While the severity of the disorder varies from child to child, the symptoms include low muscle tone, failure to thrive, developmental delay, crossed eyes, blood clotting disorders, seizures and more.
“We’re just trying to get them healthy and to a place where they can live a normal life,” said Jackie Trezis, the girls’ mom.
Serenity and Kaylee are the daughters of Jackie and Justin Trezis. The family lives in Hampton.
Serenity is a joyful 4-year-old who loves princesses. Her favorite princess is Ariel from the Little Mermaid.
In March Serenity had to have heart surgery to close a hole. While she hated to think in worst case terms, Jackie said there was a chance her daughter might not survive, so she wanted to give her the best fourth birthday party.
The family held a Little Mermaid-themed party at Sea Life in the Mall of America. For that day, Serenity got to be Ariel under the sea.
Serenity’s surgery was successful and Jackie said the little girl will continue to work with therapists and doctors to help her to continue to improve. The goal, Jackie said, is to get her to where other kids her age are.
Jackie describes 2-year-old Kaylee as a little teddy bear. She loves to give hugs and smiles.
“She brightens up any room,” said Jackie.
Kaylee, though, faces a much tougher battle than even her sister. She’s struggled to gain weight and has been placed on a feeding tube. She also has developmental delays which have required her to be in a wheelchair.
There have been some scary moments with Kaylee, especially because of her failure to gain weight. Jackie said as parents they’ve had to talk about the possibility that Kaylee may not live into adulthood.
“I just have to keep the faith,” Jackie said. “If Kaylee does die young, I know God has a plan.”
For now, Jackie said, they fight to keep her alive and progressing.
There are four children in Minnesota that have been diagnosed with CDG type 1 and two belong to Jackie and Justin Trezis. It took a long time to get a diagnosis on why the girls were struggling. But finally, last year, genetic testing shed some light on the girls’ struggles.
Jackie said she and her husband Justin both carry a damaged gene, which caused the girls’ CDG. With that knowledge, the couple has decided their family is complete.
Getting a diagnosis has provided few answers, though. There are few treatments for the condition and because it’s so rare little research has been done.
Asking for help
With their disorder being so rare, Jackie said they have not met many others who can relate to their situation. To meet others, the Trevis family would like to attend the CDG Conference June 27 to 29. The conference is held every three years in the United States.
In addition to meeting other families going through similar experiences, Jackie said they will also get to learn about new and upcoming treatments and research being conducted specifically for CDG. Depending on what’s available, they may be able to enroll the girls into research.
To help provide the financial means, there will be a spaghetti dinner fundraiser from 3 to 8 p.m. May 17 at the Rosemount VFW, 2625 120th St. W. Jackie said they will accommodate those with gluten-free needs but for planning purposes need to know in advance.
In addition to dinner, there will be a silent auction held from 5 to 7:30 p.m. The Jackie said people have been generous in donating items and the auction will feature more than 40 items.
Tickets can be purchase in advance at teamserenitykaylee.webstarts.com. Cost is $10 for adults, $5 for children older than 3.