Since Jordan and Zach Mixon’s younger daughter, Peyton Claire, was diagnosed with GM1 Gangliosidosis, the family’s “new normal” redefines itself with each of Peyton’s setbacks and triumphs.
Preslee – Peyton’s big sister, who will enter pre-kindergarten in August, has inherited the Mixon family trait of resilience from both of her parents.
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She keeps busy with tumbling and dance lessons, play dates with cousins, sleepovers with her Mamaw and pool days and hot tub time at her Mammy’s. Preslee even goes fishing with her father.
“Preslee loves to get her picture made with her little sister, Peyton. She loves to play with her little feet and help Peyton play with her switch toys,” said the girls’ mother, Jordan.
“As a mother, all I want for Preslee is for her to feel loved and included and have as normal of a childhood as possible with great memories.”
Nothing rejuvenates Jordan’s spirit like God, girlfriends and a 13-week-old Biewer Terrier named Posy.
“If it were not for my relationship with God, I would not be able to make it through each day. When I am worn down, exhausted, I call out to Him, and He sees me through and gives me the strength to carry on another day,” Jordan said.
Posy only weighs 3 pounds, but she brings a ton of love to the Mixons.
“She knows how special Peyton is and curls up and snuggles her very frequently. She follows me around as I go room to room taking care of Peyton, and she plays with Preslee all the time,” Jordan said.
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Peyton also has a special Build a Bear from Jordan’s maternal grandmother, Pat Price, also known as Mamaw.
“It has Mamaw’s voice on it, telling her how special and beautiful and how much she is loved,” Jordan said. “We call that one the Mamaw bear.”
GM1 Gangliosidosis
Peyton was born on April 11, 2023. When her parents noticed that she wasn’t hitting milestones the same as her sister, they began a quest that resulted in Peyton being diagnosed with GM1 Gangliosidosis.
According to the website cure GM1.org, the rare, inherited and incurable genetic disorder primarily affects children. It may cause developmental regression, mobility deterioration, seizures, visual impairment and neurodegeneration.
Jordan said she gains strength from praying and reading Scripture. She also feels empowered by keeping up to date on the active research for treating and curing GM 1.
Also therapeutic is staying involved with their community of family and friends, like Jenna Hogsed and Brittany Davis.
“Jenna Hogsed is my sister in law, hand-picked by me. Brittany Davis and I have been in school together since first grade, so I know her strengths very well,” Jordan said.
“She has been helpful to us by keeping up the social media accounts for Peyton, and she has volunteered her time to help with fundraising.”
A look at Peyton’s journey
May 23, 2024: North Carolina proclaimed this day as GM1 Gangliosidosis Awareness Day.
June 12, 2024: Peyton had a J-tube placed and her ear tubes replaced.
Early September 2024 (from a GoFundMe page organizer): Peyton has been experiencing symptoms like intermittently low oxygen saturation. Fever, cough and vomiting have at different times emerged. She is on supplemental oxygen because of some apnea episodes.
Sept. 12, 2024: After several seizures, back in the PICU, back on an EEG and is receiving a couple of different meds to get them under control.
Sept. 13, 2024: Positive for rhinovirus.
November 2024: Howard’s Bait & Tackle in Hiwassee Dam sponsored a raffle for a Henry Golden Boy .22LR to benefit Peyton. The drawing was held on Jan. 3.
January 2025 (from Mimi Mixon, GoFundMe page organizer): Peyton, Preslee, Zach and Jordan had a very special holiday season. They spent lots of quality time with family and friends, saw many Christmas lights and even won the float contest at the Murphy Christmas Parade.
Shortly after Christmas, however, Peyton got very sick. She developed a high fever and struggled to breathe. She was diagnosed with bilateral pneumonia and another respiratory illness, low oxygen and high carbon dioxide.
Peyton was admitted to the PICU and put on a ventilator at Arthur Blank Children’s Hospital in Atlanta. The ventilator allowed Peyton to rest so her body could fight the infection.
“When we were snowed in at Arthur Blank Peyton’s father, Zach, drew a butterfly in the snow for her to enjoy from her window. This led to many more patients’ parents getting out and doing the same for their little ones,” Jordan said.
Jan. 2, 2025: Peyton has been weaned down to 5 on the ventilator. They will not extubate today, but the plan is for tomorrow if everything continues.
“I will get to hold her at 11 a.m. today. They have to coordinate with the nurse, PT and respiratory before I can do that, so I haven’t gotten to in a week. Please continue to pray that everything goes well and that we keep going in the right direction,” Jordan said.
The road ahead
The Mixons are looking forward to attending Peyton’s Home Run Derby fundraiser on the first weekend of March.
“We hope it is a great turnout and any opportunity for the community to come together for our little Peyton,” Jordan said.
Today, medical goals for Peyton include finding a night nurse.
As unknown challenges await them, Jordan is grateful for friends and family, who she said are too many to name but have all helped in various ways.
“My cousin Emily Odom has helped on an almost daily basis with housework and bringing her daughter to play with Preslee,” Jordan said.
“My sister, Liz King, has come to give Peyton shots and home care along with several of my nurse friends specifically, Heather Watson and Kristin Drake. After our latest three-week hospital stay, we were blessed with a meal train for several weeks.
“It was unbelievably helpful.”