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7Everyday Hero: Colorado mom forms a health match making system

Posted: 8:52 AM, Sep 17, 2018
Updated: 2018-09-17 10:52:17-04

If you are facing a medical crisis or rare disease, there is a good chance you may also feel isolated. Like you are the only one going through it all. 

What if you could connect with someone facing the same hurdles, someone who truly understands what you're going through?  

7Everyday Hero Makayla Allison allows you to do just that. 

Her 7-year-old daughter Lily lives with a rare and often invisible disease. 

"Lily has a condition called Ehlers Danlos Syndrome," Allison said. "And we've learned over the years it's a spectrum disorder."

So, some days Lily is full of energy and other times she needs a wheelchair. 

But at every moment she just wants to be treated like others. 

"Although I want them to know about my disease and stuff, but I don't want them to treat me differently," Lily said. 

But being brave is a challenge when you battle a disease few understand or even see. 

"When you suffer from something that is invisible, it's hard to figure out the times to disclose and who you can relate to," said Shawnae Jebbia, spokesperson with a group called Some 1 Like You. 

Lily's diagnosis was certainly frustrating for her mom. 

"We would ask her doctors if they knew anyone else who was going through something similar," Allison said. "Even when they said 'Yes,' they couldn't connect us because of privacy rules. And I just didn't feel comfortable posting the most intimate details of our health condition on the internet." 

As a result, Allison started Some 1 Like You, or S1LY.

"We privately connect individuals with health conditions," she said. 

S1LY is an online match-making service for people with health conditions. 

"Individuals submit a connection contact form and it lists their email address and the symptoms, challenges or diagnosis that they possess and are looking for in someone else," Allison said. 

All the information is encrypted and stays between the two parties who connect. 

After two years, there are about 4,100 memberships nationwide. 

The lifetime $50 membership covers the cost of the service. And for each one bought, another is donated to somebody fighting a disease. 

To help provide scholarships to places like the Ronald McDonald House, S1LY sells things that anyone might enjoy. 

"It is called the Be Kind project, and it is a way our program is funded," Allison said. 

There are Be Kind hats, and stickers and necklaces. To check out the merchandise click https://www.some1likeyou.com/shop

Allison has always nicknamed Lily as Silly Lily, so group members often say, "Be Kind, Silly." 

For people with a condition that few others recognize or even see, that makes a difference. 

"Don't judge what they look like or their condition," Lily said. "The real way that you should look at it is in their soul."

It is easy to see why Lily is the inspiration behind S1LY. But her mom is the group's heart and soul. 

"I don't think I have met someone as passionate as Makayla," said Aubrey Troeger, S1LY ambassador. 

Emma Burt, another ambassador said what Allison is doing is very unique, and often overlooked. 

To learn more about S1LY, go to https://www.some1likeyou.com . Scholarships to connect with someone are available by going to info@some1likeyou.com. 

Mitch Jelniker anchors Denver7 in the mornings from 4:30-7 a.m. He also features a different 7Everyday Hero each week on Denver7. Follow Mitch on Facebook here and Twitter here . Nominate a 7Everyday Hero here .