TROUP, Texas (KETK) – Sadie Jewel Stewart is fighting a battle that no child should.
Sadie, 4, has Spinal Muscular Atrophy with Respiratory Distress, or SMARD, a progressive genetic motor neuron disease that currently has no treatment or cure. The disease affects the lower motor neuron cells of the spinal cord that control voluntary muscle activities like swallowing, breathing, walking and talking.
Sadie requires a ventilator to breathe. And ventilators require electricity to work.
So … what happens to Sadie when the power goes out?
The folks at Martin’s Chapel Church of the Nazarene have staged a benefit to make sure that she and her family never find out.
The church is hosting a fish fry Saturday, from 11 a.m.-2 p.m. to raise money for an emergency power generator that will keep Sadie breathing even if the power fails.
The benefit will be in the church gym.
For those who want to help but can’t make it to the fish fry, a Social Fund, much like a GoFundMe, has been set up for Sadie and her family.
Sadie was diagnosed with SMARD before her first birthday, and she’s been fighting ever since. But if you check her Facebook page, you’ll see that, despite the grim disease that afflicts her small body, she has a spirit larger than life itself.
She’s the Disney princess-slash-heroine we all need just now.
Martin’s Chapel Church of the Nazarene is at 569 County Road 4610
Troup, Texas 75789. Go have some fish for Sadie’s sake.
And if you want to know more about SMARD, the other patients – so many of them children – suffering from it, and how you can help #SmashSMARD, see the website here.
But always, always be like Sadie and shine.