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Peyton Mixon shows off her great smile.
Murphy – April 11, 2023, was a joyful day for Jordan and Zach Mixon, who gave Preslee Mixon a baby sister.
Peyton Claire Mixon weighed 7 pounds and 8 ounces. Her parents expected her first year outside the womb to unfold much as Preslee’s.
“But in the first year of Peyton’s life, we noticed that she was getting very sick after normally mild illnesses and missing developmental milestones. She was not even close to reaching milestones like rolling over and lifting her head up,” Jordan said.
“I also noticed changes in her behavior, like stiffening, sleeping more than normal, not smiling as much, etc.”
The doctors at Scottish Rite agreed to expedite diagnostic testing. On March 21, they learned Peyton Claire’s diagnosis – GM1 Gangliosidosis.
GM1 Gangliosidosis is an extremely rare, incurable and aggressive disease that progresses quickly in infants. It causes a buildup of molecules in tissue and organs, which causes irreversible damage to the brain and spinal cord.
A few clinical trials existed, and Peyton’s parents had been working to procure a spot for her in one of them. A few days ago, however, the Mixons discovered that those clinical trials are all closed, losing their funding because they failed to demonstrate efficacy.
Moments together as a family became even more precious.
“Peyton is a happy, laid-back child with the sweetest demeanor. She seems to know exactly when we need to see her beautiful smile and gives us plenty of them daily," Jordan said.
While they continue to explore off-label treatments to slow the disease’s progression, the parents want to give Peyton as happy and normal a life as possible.
Jordan works at Ameriprise financial in downtown Murphy, while Zach works at his family’s landscape business, Lawns Unlimited. While he is working as many hours as possible to provide for his family, she has decided to not return to work in order to provide the full-time care Peyton needs.
Jordon said she knows money doesn’t fix anything, but not having to worry about finances would be a great gift.
The family’s mounting medical bills include ongoing physical and occupational therapy sessions. Usually insurance pays for a handful of sessions each year. Peyton requires many more PT and OT sessions than their insurance covers.
Often, insurance doesn’t cover some adaptive equipment, or there can be unrealistically long waiting lists for shared equipment, making it necessary to purchase some equipment.
Travel expenses are regularly incurred for the countless trips to Atlanta. That could increase if a trial or study becomes available.
The Mixons’ friends have launched a fundraiser for them. gofundme.com/f/help-baby-peyton-fight-gm1-gangliosidosis? So far, $26,225 of its $100,000 goal has been raised.
On Saturday, April 27, Howard’s Bait & Tackle will hold a barbecue plate fundraiser for Peyton at 15 Sandy Gap Road starting at 11 a.m.
They receive spiritual support from Grape Creek Baptist Church and First Free Will Baptist Church of Hayesville.
“We always want to give God glory. We believe He is using Peyton’s life for good and that she is touching lives,” said Jordan.
The Mixons are considering ways that may help prolong Peyton’s life until a trial, treatment or cure is found.
Jordan and Zach want Peyton to feel comfortable, happy and loved and make as many memories as possible. Three-year old Preslee loves to play with her baby sister.
April 11, 2024, was a bittersweet first birthday for Peyton. It was celebrated with the extravagant party it deserved, and Peyton’s family hopes many birthday parties will follow.