Wheels for Denalli | {Maggie Mondays}

Many of you know I have a beautiful little niece and have walked the journey with me as we discovered she was diagnosed with SMA type II. Devastating? Yes. I've been inspired by the way my sister, her husband and the family have taken the years that have followed in stride. Little Denalli is the most inspiring though- her will to fight through the pain and frustration of what she can't do and push her limits doing things they said she'd never be able to do ... each time with a smile on her face shows just how strong of a spirit and will this little girl has. Last Summer/Fall after years of fighting with insurance companies denying Denalli a wheelchair that would give her the freedom she longed for... that would give her a better quality of life my sister decided she'd start raising the money to purchase the chair for her. Raising money for a wheel chair? Simply because this chair's price tag was $40,000.

So after many long months, numbers benefits later, thousands of dollars graciously given by families and individuals she knew and many she's never met... it was a long road and they had been able to raise just over 20,000. Living in a community of just a couple hundred people far removed from any urban area in the wide open prairies of South Dakota hiking mount Everest would be easier than trying to raise another $20,000.... so she took it upon herself to contact the company who distributes the chairs and then the manufacture and with her determination she eventually worked her way to the President himself. She shared their story, shared about how their little community and many people they'd never met stood behind them and contributed to help Denalli get this chair and many prayers later the President asked one question. "How much have you been able to raise so far?" She answered and his next response was, "Well, I would be happy to see this litter girl get her wheels."

Yes- my goal was for her to have the chair for Christmas and little did we know that less than a month after Christmas they'd deliver a hot pink custom chair for Denalli. A chair that would open up an entirely new world of freedom for this sweet girl. A chair that would literally change. her. life.

It's in the little things of zipping around and racing her brothers and sisters or lowering herself down to pet the dogs and peer into their eyes or raise the chair up and pet the horses. It's the ability to zoom over and pick up a shiny rock, lay back and rest or take a nap and actually participate during recess and gym with her classmates at preschool.

 

You can follow her journey fighting this awful disease here.

While I was home in April I zipped up the road (only 4.5 hours) with my grandparents to visit the Voss family. Denalli was SO excited to show off her new wheels and hearing her squeal with joy as we played tag and she zipped around with her brother was the most beautiful sight and sound I'd seen/heard in a very long time.

Sister likes to give lots of wet kisses. :)

She was chasing me as I ran backwards and snapped pictures... I love this particular frame and her contagious smile!

Yes- it's Monday and this is Maggie Mondays SO maggie wanted you to meet Odie. They were bestest buds while we stayed in South Dakota.

Grandpa and his grandkids checking out the ponies.

Check out those curls...

So it's slightly out of focus... but her smile still shines!

it was so neat to see her take off after her brother... with her beautiful smile of course!

She's got crazy driving skills all with that little joystick.

How can you not just love this little girl?

It's not a very big chair but it's given her freedom and the ability to have a taste of what "normal life" might be like.

 

Thank you to each of you who were part of helping Denalli get her chair- for those that came out and did mini-session last Fall or took it upon yourself to contribute to the "Wheels for Denalli fund". If she could meet you she'd share her beautiful smile along with the biggest little hug she can give.

She continues to fight, continues to smile and each day she does her best to make the very most of every minute she's given.