The Price of Freedom | SMA
Can you imagine living life with all mobility taken from you.
Life where you are 100% dependent on others to get from point A to B or to be placed in a wheelchair so you can navigate the distance yourself. Would you remain joyful? Could you smile freely? Would you feel discouraged?
We so easily take the ability to walk, crawl, sit up, and go frolicking across the yard for granted. To wake up each morning and get dressed or walk down the stairs on our own - completely independently.
I want you to meet one of the most loving and kind hearted, thoughtful and genuine seven year olds I've ever known: my adorable, beautiful, and free spirited niece, Denalli.
Denalli appeared to be healthy when she was born, but as my sister started noticing she wasn't achieving simple milestones like rolling over or even kicking off her blanket in the crib at night she knew something was wrong.
Denalli has SMA II (Spinal Muscular Atrophy Type 2). Basically it's ALS in childhood form, except these kids never have the strength or muscle to start with.
This little chair has given Denalli the ability to have freedom anywhere she goes. Inside, outside, or even when she's running errands with her mama.
This is Ryka, Denalli's youngest sister. She also has the same ugly disease, although it's affected her body in drastically different ways.
Ryka is 3 years old and has never stood alone. Even with support she's unable to hold up her own body weight. This doesn't seem to get her down though. She's full of personality, love, and numerous expressions - a little comedian in the making!
Oh, and she's fallen in love with "Baby Maggie". Maggie is 7, but Ryka won't be fooled and only refers to her as "Baby Maggie" or "Baby Puppy".
Their love seems to be mutual!
Two little girls, one disease. Both filled with love, smiles, and laughter for life. An incredible source of inspiration indeed!
This is Ryka giving it all she's got to move alone and "scoot" from Point A to Point B.
Each and everyday they watch the rest of their siblings (3 in the middle) walk, jump, crawl, run, and move around freely. But there's no bitterness inside these girls - only resolve to keep up and do their best to make the most of the life they have.
They were blessed with "Blue" a lightweight manual wheelchair made in Europe that gives them the mobility to keep up with the rest of their siblings and freedom to move on their own accord. While most of us would still feel limited and frustrated being confined to a wheelchair, they feel proud and are filled with excitement and joy when they're able to move independently and freely.
The chair costs $3500, so they only have one.
I decided in sharing these pictures and their story that I wanted to do something more than just share... I'd love to rally YOUR help to give these girls a second chair so they can both "roll" and play together with the rest of their siblings. Something they've NEVER done before!
Just to show how determined this little girl is... don't miss this video of her being Mommie's big helper.