Baby Ella - Battling SMA and Living the Life of a Princess

Sugar and spice and everything nice, according to the nursery rhyme is what little girls are made of.

And the Hunt family of Osceola would agree. Their five month old daughter, Ella Lanay is an unbelievable joy, despite the fact that she was born was a fatal genetic illness called Spinal Muscular Atrophy. Ella's mind is normal, but she can't move.

Like many parents, they want their first daughter to experience the joys girls do growing up, but they have to do it in the time they have.

Ella may be one of the youngest girls with a Facebook page, but that's where her mom Erica and dad, Dan and brothers Noah and Carter post their dream list for Ella.

Erica suspected something was wrong with Ella by the time she was about ten weeks old. She just wasn't meeting the milestones parents are used to.

Doctors first suspected a muscle condition but a trip to Riley Children's hospital on December 20th gave them a diagnosis.

Research is ongoing, but most children with SMA don't live past two, according to Erica. "It is a fatal disease so it will take her life. We just don't know when."

The Hunt's say the ride home from Indianapolis was a long one, but Erica says they made a decision the family would live by.

Dan and I committed that we weren't coming home to die, that we were coming home to live. As you can understand when a parent gets word like this, especially a mom, my only daughter, and you just think of all those dreams you had and things that you wanted to do that aren't going to happen."

But the Hunt's are committed to making as many of the dreams parents have for their daughters come true and her Facebook page is one way to do that, adding to it daily.

And Erica says they are making those dreams come true, "We've traveled to Disney World, she's spent many many moments being with princesses and watching princess movies, and she's been to the American Doll Store and rode in two limos and she's had a 5 month birthday party. She's going to play with paper dolls this week and make smores and when the winter passes we're going to dance in the rain"

Erica says they believe it's important to do the things we normally put off, thinking we have the time. "This is something that no parent would choose, but that we want to make the best of it."

Ella's bedroom is a tribute to their princess. Her Build-a-Bear's stuffing includes a family picture and notes from the family.

Her closet is filled with frilly dresses with matching princess slippers.

Ella wears a different dress each day and has her picture taken.

A friend has started Ella's Legacy Collection, making purses from Ella's dresses that will come, complete with picture, benefiting other families dealing with SMA.
For now, the Hunt's are making the best of life and enjoying the time they have with Ella, and when the day comes that their little princess may no longer be with them, they will take comfort in knowing her short life was well lived.
And they pray that ongoing research may come in time to save Ella, "the reality is that thinking past this moment, and past this day, is too painful, it's just too much. But there's always hope. There's always, always hope.

Hope for a little girl whose named ELLA, they say stands for Everyday Living Life Abundantly!

This Saturday, February 4, is Memorial Children's Hospital's Hearts of Gold Mall Walk at University Park Mall and Team Ella will be there raising funds for the hospital. To register, we have a link on the Big Red Bar.

And to learn more about Ella and SMA and to "like" Ella's Facebook page we have a link below:


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