Update: ‘Baby Ella’ continues fight against rare disease as mom heads to Washington D.C.

Published: May. 1, 2016 at 2:37 PM EDT
Email This Link
Share on Pinterest
Share on LinkedIn

It was almost five years ago when we first introduced you to Ella. Back then we referred to her as “Baby Ella,” but she is almost five now. At this age she is still struggling with a rare disease called spinal muscular atrophy.

“It's a disease that desperately needs a cure. It is a terminal disease. There's nothing we can do for these children,” explains Ella’s mom Erica Hunt.

That is why FAST or Families for Acceleration of SMA Treatments is heading to Washington D.C. right now. They talked to FDA officials Monday at 4 p.m. The goal is to open conversation between these officials and families affected by SMA. These parents want them to move faster with medicine that could save the lives of thousands of children and adults struggling with SMA.

Hunter is another child who was diagnosed with SMA. Like Ella, he was given weeks to live. Almost five years later, he too continues to fight.

“We just returned from our 43 lifesaving treatment in Mexico,” says Hunter’s mom Khrystal K Davis.

That’s the difference between Ella and Hunter. Hunter is currently receiving medication in Mexico.

“The difference is remarkable and heartbreaking. Hunter can swallow. He can sit up right. We don't have to worry about him choking. Hunter can still move is arms and grab things he wants to play with. It is because he has had the benefit of treatments and Ella hasn't,” says Davis.

Hunt says Ella is too weak to qualify for trials. That means she is not able to receive medication.

“Her physical body is very broken. Her spirit is very strong. Her will is very strong, but SMA is unfortunately winning the battle,” says Hunt.

Erica and Khrystal say when you compare Ella and Hunter you see similarities. They are the same age and have the same disease, but they hope these FDA officials see the differences.

The difference is that one has medication and one doesn't, one gets stronger and one doesn't. It’s these differences they hope encourage officials to approve these medications faster. Medication they say is clearly already working.

“We aren't looking for our kids to walk, but we need our kids to have their disease stopped and some of the drugs in trial can do that,” says Hunt.