Bill Capo / Action Reporter
NEW ORLEANS -- Amelia Bennett, 10, is taking classes at home. It is too risky to her health to go to school.
'I like being home,' Amelia said. 'Because before school I can watch TV.'
Amelia has a rare disease, Fanconi's Anemia, and was born without thumbs. She is missing bones in both hands and arms. There's no cure, and Amelia is beginning to get sicker.
'Amelia is now in bone-marrow failure and needs her transplant desperately,' said her mother, Kelly Bennett.
You first met Amelia in an Action Report nine years ago, when she was 18 months old, wearing a body cast, and watching her brother Marshall as he waited for his bone marrow transplant because he had the same disease.
It was overwhelming for Kelly.
'People just don't understand the daily struggles that we go through,' said Kelly in tears.
Marshall had his transplant 7 years ago, and now at age 19, he is the picture of a healthy teenager.
But Amelia's transplant became problematic when the family learned the cost for the operation could reach $800,000, far higher than their insurance coverage.
'I was just pins and needles,' said Kelly. 'I mean, I had everyone begging, praying, everything to get them to try to change their policy.' She said it was 'Extremely, life saving important' for Amelia.
Amelia's dad is a St. Tammany deputy. Their insurance is through the Louisiana Sheriff's Association, which has a $300,000 dollar cap on transplants. So when Kelly e-mailed me that Amelia's condition was getting worse, I contacted the executive director of the association, asked them to take another look at the insurance policy.
And they had a board meeting, and that's when Kelly got a call that left her breathless.
'I cried, I cried, even the lady who called me from the sheriff's department cried.'
And her dad found the policy change affects others in similar situations.
'It is not just for Amelia. My husband went to work this morning, and he called me a little while ago, and he said people came up to me, and were like thank you, thank you.'
Now friends have organized a fundraiser called Amelia's Hope on Saturday, March 12 at the Fleur De Lis Event Center in Mandeville, to help the family with donations to cover medicine and living expenses in Minnesota during the transplant.
'It's gonna be great,' said Amelia's Hope Organizer Jamie Perrilloux. 'We are going to have music, we're gonna have wonderful food. There is going to be a silent auction.'
'She has a chance, a definite chance now,' Kelly said.