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'My son is a miracle' | Local 3-year-old dealing with rare genetic disease needs help to continue improving

'Insurance does not cover a lot of things,' his mom said. 'There should never be a price tag on a life.'

O'FALLON, Mo. — At the age of 3, Ryan Jones has already overcome many obstacles. 

Just six months after he was born, Ryan was diagnosed with a rare genetic disease, known as Spinal Muscular Atrophy Type One. There are four types: zero to type three. Zero is the most severe.

"Pretty much he doesn't have one of the necessary genes he needs to produce signals from his nerves to his muscles," His mom Allyson Jercick said. "He loses all voluntary muscle movement."

Since then, his life has forever changed. 

"He's connected to a ventilator and a wears a bi-pap mask, so he doesn't have a trach. He has a suction machine because he can't swallow. He can't cough like we can, so he needs to use a cough assistance machine to get the mucus and things like that out of his lungs so he stays healthy," Allyson said. "We use these before his cough and suction so it can break up what's sitting in his lungs. He has a feeding pump. He's on a continuous feed."

Even though he's tied down by multiple tubes, Ryan has shown that he will never give up. 

The doctors even told Allyson, that he wouldn't have much time to live after the diagnosis. "That really lit a fire in me," his mom said. 

But it also lit a fire in Ryan.

In just three years, he is now able to move his head back and forth. He was even able to wave at the camera Monday. 

But in order to keep up with the improvements, he needs help. 

"Insurance does not cover a lot of things. There should never be a price tag on a life," Allyson said. "There's ton of a thing he needs for his food on a monthly basis for his feeding tube that insurance doesn't cover and it comes out of pocket. Adaptive switches, so he can communicate and learn."

Allyson knows that her son will be able to thrive even more with the tools that can make him even stronger. 

"He is worth every second of it, everything that we do everything that we go through. I'm just grateful for every second that we have with him, for all of them," Allyson said.

She said that her son has taught her courage and strength, because he shows that to her every day.

Allyson doesn't work since she is taking care of Ryan. She has started to create her own tubing and feed bag covers for other children just like him, so it makes the process a little less scary. She's just trying to come up with the means to get Ryan's necessities. 

If you'd like to help and donate, you can click here

Missouri was the first state to add SMA to the newborn screen. Allyson said that as soon as babies are diagnosed they can get treatment, and time is of the essence. 

There is a movement called 'The Fast Movement', meaning Families for Acceleration of SMA Treatment. SMA moms advocate to politicians to add SMA to the newborn screening, along with other efforts to help children. 

If you are in need of support or help, there are multiple SMA groups on Facebook or online. 

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