GREGG COUNTY (KLTV) - They are on a mission to find a cure. Two East Texas parents are drumming up support for federal funding that would help find a treatment for babies, like their 20 month old son Dakin Lovelace, who is fighting a rare disease.
By the looks of Dakin Lovelace's smiling face, you couldn't tell that he struggles with a rare disease.
"Dakin is the happiest child in the world. I've never seen a child who is happier than he is. He is all smiles, all the time and considering everything he has to do on a daily basis--that's amazing," said Devon Lovelace, Dakin's Mom.
At just three months old, little Dakin was diagnosed with a rare disease called, spinal muscular atrophy with respiratory distress.
"Literally one day he couldn't breath anymore," said Lovelace.
Dakin is hooked up a to ventilator 24/7 and doctors say he will be wheelchair bound for the rest of his life.
His parents Devon and Big Dakin are just blessed that he's still alive.
"Knowing that he's not going to be able to walk and run and play like other kids, that was probably the hardest part," said Lovelace.
To help families with babies like Dakin, the Lovelace's are urging Congress to pass the," SMA Treatment Acceleration Act," which would allocate funds to help find a cure.
"Its a bipartisan legislation, both sides of the isle are behind it, we just need more Congressmen and Representatives behind it. If we can get this money, within 5 years they're going to have some kind of treatment or cure," says Lovelace.
A cure for Dakin and babies just like him, that could change their lives.
"My hope is that someday Dakin will be able to come off his ventilator, or get out without the need of a wheelchair. And for other families who suffer from this horrible disease, that they'll be able to get to see their little one's grow."
If you would like to sign a petition to help find a cure, you can visit www.petitiontocuresma.com. There you will find SMA cure petition.
For more information on Spinal Muscular Atrophy you can go to www.fightsma.org .
You can also find out more about Dakin at www.ventsuperman.blogspot.com
The Lovelace's are meeting with Congressman Louie Gohmert this week in hopes to get his support.