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Squamish's 'butterfly' boy thriving with the support of family and community

MMA fighters Cole Smith and Jamey Horth in 3-year-old Nash Smillie's corner
community EB
Nash Smillie.

Emily Tomlinson's voice breaks with emotion when she speaks of what her young son can do that she never thought possible. 

The Squamish woman is proud mom to Nash Smillie, a curious and happy three and a half-year-old boy who was born with epidermolysis bullosa, or EB, a rare genetic disease that makes his skin very fragile. 

The painful condition, which causes blisters and lesions on Nash's skin, requires wound care multiple times a day. 

Youngsters with EB are often called "butterfly children" because their skin can be as fragile as the wings of a butterfly.

There is currently no cure or effective treatment for the disease.

EB community
Nash Smillie. - Courtesy Emily Tomlinson

When he was a baby, Tomlinson and Nash's dad Kevin Smillie were told Nash would likely never be able to do a lot of things, including go swimming. 

"We were told to never put Nash in a public pool or never put Nash in a lake. But because I want to give Nash every opportunity to grow up like a normal child — because he really is, he just has extremely sensitive skin — we try all of those things," she said. 

And Nash absolutely loves swimming. 

"That is one of his happy places. It is something he can go and do — I am going to cry — but the water doesn't hurt him," she said, her voice cracking.

Tomlinson says Nash's ability to swim is an example of how not every EB child is the same.

"There are so many things that I thought Nash would never be able to do that he is doing today." 

What helps or hurts one child may not do the same for another, she added.

There are also some tips and tricks she learned from others in the EB community that can allow Nash more freedom to be a regular kid, such as using sheepskin under sports gear. 

"He is thriving," she said. "He is one of the happiest, most positive little guys I know, despite what he faces every day." 

Another thing Tomlinson didn't think Nash would do when he was first diagnosed is attending preschool fulltime. 

But he does. 

 
 
 
 
 
 
 
 
 
 
 
 
 

On UFC fight week, I teamed up with 3 year old Nash Smillie, who suffers from rare skin condition called Epidermolysis Bullosa aka EB. For people like Nash, the smallest bump or friction to the skin can cause blisters or their skin to shear off - they’re often referred to as Butterfly Children. (Skin as thin as butterfly wings) At this point, there is no cure or effective treatment for this devastating disease. After hearing his story, I wanted to do something to help Nash, and his family during National EB Awareness Week, so I had a UFC fight jacket autographed by many big names in the sport, during my last fight in Vancouver. Today, we are going to be auctioning it off in hopes to raise funds and awareness for EB! To bid on this one of a kind and to help Nash, please send me a message, or visit the post on my FB page done up by Nash’s Mom, Emily Tomlinson. Bidding is now at 500$ and goes up by increments of $25. Bidding closes on Nov 3. Let’s all come together, In Nash’s Corner - Fighting - EB! - Some of the awesome fighters and people who took time out of their fight week to sign: - @dc_mma - Daniel Cormier @cowboycerrone - Donald Cerrone @justin_gaethje - Justin Gaethje @uriahhall - Urijah Hall @razorblaydes265 - Curtis Blades @gloverteixeira - Glover Teixeira @joe_schilling - Joe Schilling @bradkatona - Brad Katona @jimmycruteufc - Jimmy Crute @mishac911 Misha Cirkunov @mmatristan - Tristan Connelly @pit_master - John Hackleman Trevor Wittman —————————————————- Thank you to all these amazing fighters !! Something so small can go a long way - - - @iridiumsportsagency #eb #ebawarness #auction #ebcanada #butterflychildrenshospices #butterflychildren #ufc #arielhelwani #helpsupport #fundraiser #mma #ufcathletes #ufcfighters @arielhelwani

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"He has a great group of friends and amazing teachers and educators there who go above and beyond for Nash," Tomlinson said, adding students and parents have been educated on butterfly children. 

Two powerhouses who have also supported the family are MMA fighters and Squamish locals, Cole Smith and Jamey Horth. 

"It can be very isolating and very scary," said of having a child with a rare disease. "But fortunately, we live in such an amazing community where we have others, we can rally around and support each other." 

Smith and Horth fundraise and raise awareness about the disease. 

At his last UFC fight in Vancouver, for example, Smith got an official UFC fight jacket that he went around and had autographed by many of the top names in the UFC. He has donated that jacket to the family to auction off. 

"When he approached us and said he had done that, we were completely blown away," Tomlinson said. "Didn't expect it at all. We are extremely grateful for his generosity and support, even thinking of Nash and how he could help during Fight Week was amazing. 

Horth has been a supporter from the start, Tomlinson said. 

"She is always looking for ways to support Nash and us."

She made EB-awareness T-shirts for them through Squamish Source for Sports, for example, and helps the family year-round with fundraising efforts. 

"We are extremely grateful to have them both in our corner. Without people like them... raising awareness, it would not always be possible." 

Asked what she biggest thing she's learned in the last three years, she said that despite the challenges the family faces every day, there is always something to be grateful for. 

"Nash lives in pain every single day, but he still manages to smile and brings so much joy to everyone he meets. I think we can all learn a lesson or two from him — life is tough, but so are we. We learn to adapt and overcome, and through that mindset, all things are possible."

Oct. 25 to 31 is National EB Awareness Week.

 For more information on how you can help support those like Nash, who suffer from EB visit www.debracanada.org.

 

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