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

February 1, 2012

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

WNDU (NBC) | February 1, 2012 | By Maureen McFadden

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.”

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Hoskins family continues fight for Zion

September 2, 2011

Hoskins family continues fight for Zion

Banner Graphic | September 1, 2011 | By Lauren Boucher

Chelsea and Paul Hoskins have watched their son, Zion, grow up knowing that he will never be able to walk or stand on his own. In the past year there have been several fundraisers in place to aid them in funding Zion’s medical bills.
The couple is reaching out to the community once again, asking for help as they try to raise money to equip their van so Zion can use a power chair instead of a manual one.

In May 2010 Zion was diagnosed with spinal muscular atrophy or SMA. Zion’s daily life now consists of being hooked up to a vest to help him breathe as well as a cough assisting machine, a suction machine, a pulse oximeter and breathing treatments. Each day Zion starts his half-hour treatments at 8:30 a.m. When speaking of Zion, Chelsea explained, “He will eventually get scoliosis and his back is already starting to curve so it hurts him a lot.”

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12 Days of Christmas: Four-year-old battles Type II spinal muscular atrophy, teaches others how to fight

December 17, 2010

12 Days of Christmas: Four-year-old battles Type II spinal muscular atrophy, teaches others how to fight

The Star Press | December 16, 2010 | By Oseye Boyd

SPRINGPORT — It’s hard not to fall in love with Gracie Bertram. She’s a sweet little girl, with blonde hair and a pretty smile that lights up her face. She’s quick to give a handshake or a hug upon request.

Recently, Gracie, wrapped snuggly in a pink coat, sat on her mom’s lap inside a Subway restaurant in a local Walmart. When she told her mother she wanted some Subway, Leslie Bertram reminded Gracie she didn’t even touch the Subway bought for her while at Riley Hospital for Children in Indianapolis. Gracie protested. See, the Walmart Subway is better than the hospital Subway, she said. Logic from the mind of a 4-year-old.

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