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'The hardest thing to do as a mother' | The story of Mighty Ivy

In a part of Georgia where the roads are long and straight, life in one house features a path less certain.

PERRY, Ga. -- In a part of Georgia where the roads are long and straight, life in one house features a path less certain.

Isabel Raley is the 3-year-old daughter of John and Shelly. She keeps their hands and hearts full.

"I mean, she's 3...and 3-year-olds are consuming," she said.

But she's not alone. Izzy has a twin sister named Ivy.

Ivy shares her sister’s smile but she cannot walk, talk, or eat--she does shake and face frequent seizures.

Ivy suffers from Rett syndrome.

"At this rate...I don't think she would make it past 5, if she stays the same," Shelly said.

Ivy and her twin Isabel are almost 4.

Rett Syndrome occurs in one of every 10,000 births, according to Animated Dissection of Anatomy for Medicine, and didn't show in Ivy right away.

Ivy was on track with her sister up until their first birthday. In this video she's standing and using her hands.

Shelly said things changed about a month later.

"She was distant...would not make eye contact and if she did, she wasn't looking at you," Shelly said.

"I'd say within two or three months, she lost everything."

Today Ivy requires a pharmacy and vigilant parents. "I do what the doctors tell me to and it works," Shelly said.

These parents work for one child to keep growing and for one child to stop suffering.

Photos | Mighty Ivy smiling through the fight

“That is probably my biggest problem as a mother, is to choose … and it’s not really a choice, is it, when Ivy can’t do anything by herself?”

These kinds of questions and demands can collapse upon one parent, Shelly knows this weight.

“I’ll tell you the hardest thing to do as a mother…is admit that I can’t take care of my own kids," she said.

“It affects the whole family. It’s impossible to know unless you live it, and that’s what I’m trying to do, is allow people to…live it."

Shelly started a Facebook page, Mighty Ivy, where she posts videos of her daughter and answers questions about Rett syndrome. She also unleashes her emotions in deeply personal Facebook live videos.

{"author_name":"Mighty Ivy","author_url":"https://www.facebook.com/mightyivy/","provider_url":"https://www.facebook.com","provider_name":"Facebook","success":true,"height":281,"html":"&#lt;div id=\"fb-root\"&#gt;&#lt;/div&#gt;\n&#lt;script&#gt;(function(d, s, id) {\n var js, fjs = d.getElementsByTagName(s)[0];\n if (d.getElementById(id)) return;\n js = d.createElement(s); js.id = id;\n js.src = \"//connect.facebook.net/en_US/sdk.js#xfbml=1&version=v2.3\";\n fjs.parentNode.insertBefore(js, fjs);\n}(document, 'script', 'facebook-jssdk'));&#lt;/script&#gt;&#lt;div class=\"fb-video\" data-href=\"https://www.facebook.com/mightyivy/videos/1931289943769704/\"&#gt;&#lt;blockquote cite=\"https://www.facebook.com/mightyivy/videos/1931289943769704/\" class=\"fb-xfbml-parse-ignore\"&#gt;&#lt;a href=\"https://www.facebook.com/mightyivy/videos/1931289943769704/\"&#gt;&#lt;/a&#gt;&#lt;p&#gt;Change is hard...we appreciate you all&#lt;/p&#gt;Posted by &#lt;a href=\"https://www.facebook.com/mightyivy/\"&#gt;Mighty Ivy&#lt;/a&#gt; on Monday, February 20, 2017&#lt;/blockquote&#gt;&#lt;/div&#gt;","type":"video","version":"1.0","url":"https://www.facebook.com/mightyivy/videos/1931289943769704/","width":500}

She has found a community of parents with similar stories, sympathetic ears. The following is three times the size of her home city.

“I think that’s why they’re falling in love with Ivy…because I show them what she endures and still smiles,” Shelly said.

And while Ivy smiles, everyone else keeps fighting, because for every uncertain turn, "Everything's gonna be alright," Shelly sings.

Those in the Raley house so cherish when they can all be together because then, for a brief moment, the road straightens out.

The Raleys are involved with Rett Syndrome organizations. To learn more, visit reverserett.org and rettsyndrome.org.

The family also has a Paypal account for people who want to donate to them.

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