Hi Twitter. I’ve seen you do some amazing things over the years - so I’m taking a swing to ask for some help.

This is my cutie pie niece Natalie Granados. We call her ‘Nat G’.

She’s 2.5 years old, lives in St Louis and has had a tough go of it so far. 1/

This Thanksgiving, we spent most of the day in the @ChildrensPhila where Natalie was admitted to treat a lung complication due to a respiratory virus https://abs.twimg.com/emoji/v2/... draggable="false" alt="😕" title="Confused face" aria-label="Emoji: Confused face">

She’s still there but is doing ok thanks to the amazing treatment of the world class staff there https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙏" title="Person with folded hands" aria-label="Emoji: Person with folded hands"> 2/

Unfortunately this was not the first time she’s had to get treatment like this.

It’s connected to the fact that she has hypotonia (low muscle tone) among many other ailments related to something larger that remains elusive to us & still undiagnosed.

Here’s Nat G ‘walking’ 3/

While we hope some clarity around a diagnosis will come soon - we don’t want to leave any more to chance.

With some inspiration from @LisaSandersmd & her show Diagnosis on Netflix- her parents created a video (https://abs.twimg.com/emoji/v2/... draggable="false" alt="👇" title="Down pointing backhand index" aria-label="Emoji: Down pointing backhand index">) & a site that has ALL of the information we have to date. 4/

To echo her amazing parents, @Matt87Granados & Maria - the goals of the video & site are to simply

1. Gain connections with great specialists https://abs.twimg.com/emoji/v2/... draggable="false" alt="🤝" title="Handshake" aria-label="Emoji: Handshake">
2. Ideas on therapy https://abs.twimg.com/emoji/v2/... draggable="false" alt="💡" title="Electric light bulb" aria-label="Emoji: Electric light bulb">
3. Positive vibes https://abs.twimg.com/emoji/v2/... draggable="false" alt="☀️" title="Sun with rays" aria-label="Emoji: Sun with rays">

(Not a plea for sympathy nor a fundraising effort https://abs.twimg.com/emoji/v2/... draggable="false" alt="🚫" title="No entry sign" aria-label="Emoji: No entry sign">) 5/

Couple of things worth noting:

https://abs.twimg.com/emoji/v2/... draggable="false" alt="🔘" title="Radio button" aria-label="Emoji: Radio button">Full genetic tests have been conducted & results shld come in 4 weeks
https://abs.twimg.com/emoji/v2/... draggable="false" alt="🔘" title="Radio button" aria-label="Emoji: Radio button">Looking into Mitochondrial diseases & Actin Accum Myopathy

https://abs.twimg.com/emoji/v2/... draggable="false" alt="🔘" title="Radio button" aria-label="Emoji: Radio button">Ruled out: Muscular dystrophy, Cerebral Palsy, likely not SMA. 6/

This is a 2.5 year old who’s body is not beyond a 7 month old. It’s not getting better, & we don’t know exactly why yet.

You can visit http://www.HelpNatG.com"> http://www.HelpNatG.com  for more info & idea submission.

You can tag people in or DM me.

Let’s get this lil sweetie on her feet! 7/

Lastly - in the season of giving thanks, I want to acknowledge the amazing doctors, orgs & facilities like @ChildrensPhila all around the world that dedicate their lives to helping children.

And thank you Twitter for reading if you got this far https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙏" title="Person with folded hands" aria-label="Emoji: Person with folded hands">

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