Devoted caretaker praised by family of girl with rare disease
MOORE, Okla. (KFOR) – Imagine the joy of holding your newborn for the first time, only to hear doctors say your baby would live to the age of two. That's what the parents of a baby in Moore were devastated to hear when their little girl was born with a rare disease.
But, this little girl far surpassed two—in fact, she's about to celebrate her 16th birthday. And her family credits her long-term caretaker, Rhonda Monks, for lengthening her life.
'She's smart. She knew the capitols of every state,' said her proud grandpa, Davy Russell.
Arianna Wilson Russell was born with SMA, or spinal muscular atrophy, a rare genetic disease that leads to breathing and swallowing difficulties.
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'She's a fighter, a tough little gal. So proud of her. It's hard. She means the world to me,' Davy said with tears in his eyes.
Arianna can talk, and these are the words Davy loves most to hear: ''I love you, Grandpa.''
But much of Arianna's communication is done with her eyes. The sophomore uses an Eyegaze system to complete school work, attend doctor visits, and speech therapy—and she even edits videos for her YouTube channel!
Standing by her side, where you'll often find her, Rhonda said, 'She emails her friends and she has a special friend.'
'We're more than just friends,' replied Alyssa.
Rhonda has cared for Arianna for nearly 10 years, and plans to stay as long as she's needed.
Rhonda's care is the reason Arianna's father, Gerald Russell, believes his daughter has blown her estimated life expectancy out of the water.
'Can't say enough about her. Can never be replaced. She's family,' Gerald said of Rhonda.
To truly understand the depth of their gratitude, you must also understand the depth of their grief. Arianna had an older sister also diagnosed with SMA. Cadence lived for just three months.
'Lost her Christmas Day,' Davy said, 'Probably one of the saddest days of my life.'
But because Cadence's younger sister is thriving, Davy nominated Rhonda for a surprise Pay It 4Ward award from First Fidelity Bank.
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'We are so thankful for people like Rhonda and the care that they put into everything they do, especially with kids of all kinds of needs. So, we are very excited to present $400 for her today,' said First Fidelity Bank Representative Caitlin Melgar.
As Davy handed the money to Rhonda, he said, 'Letting you know how much I appreciate you. You're awesome. Arianna loves you to death. The family loves you to death. You mean the world to us.'
'Is it okay if I hug you?' Rhonda asked. With arms outstretched, Davy replied, 'Yes, ma'am.'
'She is such a blessing, and I'm honored to be able to be her caregiver,' Rhonda said of Arianna. 'She's such a fun kid, and she makes my life better. She's grown a lot in her attitude, mind, body, spirit. We got to teach her how to read. And she's taught us as much or more as we've taught her.'
'Does your head need to come up?' Rhonda asked Arianna. 'A little bit, thank you,' she said.
'You're welcome. Arianna has very good manners, she's very kind,' Rhonda said.
'The doctors are all surprised,' Gerald said. 'All of them keep saying to just keep doing what she's doing. There's no end in sight now, the girl's gonna keep going – and it's something pretty magical.'
A magical journey for all who know Arianna, now about to celebrate her Sweet 16th, as she continues to shatter the odds.
'I am brave,' Arianna said proudly.
Yes, she truly is.
Pay it 4Ward is sponsored by First Fidelity Bank.Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
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