Baby Ella turns 1-parents urge awareness for Spinal Muscular Dystrophy

Any parents will say that their baby's first birthday is a big deal, but for an Osceola family, it is almost a miracle.

Baby Ella Lanay Hunt was born with a disease called Spinal Muscular Atrophy or SMA, which is almost always fatal.

However, Ella’s family is doing everything they can to beat those odds and, over the weekend threw Ella a birthday bash fit for a princess.

NewsCenter 16 first introduced you to Ella in January as she was getting ready to celebrate her five-month birthday.

Her family says every month they have with her is a blessing and Saturday, they marked her first birthday with a giant tent party.

Like a princess arriving in her carriage, Ella was greeted by hundreds of family and friends.

SMA is the number one genetic killer of babies under two years old and is often fatal because it destroys the nerves that control crawling, walking and even swallowing.

Erica and Dan have hope that their daughter will have a long life, but also celebrate each day with her.

”We are celebrating because Ella has made one year a beautiful life in this world,” said mother Erica.

And for the Hunt's and Ella's two brothers, there is a lot to celebrate.

“We were told that we would probably never see this milestone,” said Erica Hunt.

But the Hunt's wanted more than a party for Ella. August is SMA awareness month, and since they knew so little about the disease, which affects 1 in 6,000 babies, they thought a party was a good way to spread the word to couples to consider testing.

“One in forty people are carriers of this genetic disease and they don't realize it,” said Erica Hunt. “We had two children before Ella and they are perfectly fine. So we were blown away that we had a child with SMA, and type 1 which is the most severe.”

Doctor's have told the Hunt's that 100 % of babies with Ella's form lose their lives before the age of two.

The Hunt's are trying all kinds of therapies to extend Ella's life as and they hope NewsCenter 16 viewers can help spread the word about SMA in a simple way for the month of August.

“Ask people to tie white ribbons around their mailboxes or trees in their yard to represent SMA and SMA awareness,” said Dan Hunt.

A small gesture they hope will one day lead to more research and a cure for SMA so that celebrating a first birthday for babies like Ella, will not be a milestone.

“We could be in the emergency room tonight,” said Erica Hunt. “We could be planning a funeral in a week, it's where we're at, but we except it and we just embrace what we have and the moments that we have and this is a big moment.”

A moment they hope and pray turns into many moments and many birthdays for their little girl who continues to beat the odds.


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