TYLER, TX (KLTV) - It's the number one genetic killer of children under the age of two, and still - there is no cure. However, children with Spinal Muscular Atrophy received some good news last month, when Governor Rick Perry recognized August as S.M.A. Awareness month.
One East Texas family is thrilled by the proclamation, bringing light to the disease that is slowly killing their son.
"Someday this disease will take his life - and, that's really hard to accept," said Devon Lovelace, whose son Dakin has S.M.A. "There's nothing you can do - there's nothing."
22-month old Dakin Lovelace can't breathe on his own. It's been that way for more than a year now. 24 hours a day. Seven days a week - he is hooked up to a respiratory machine. . . keeping him alive.
"It's so rare that most doctors don't know of it - haven't heard of it," said Devon Lovelace.
Dakin has a Spinal Muscular Atrophy - a desease that causes weakness and wasting of the voluntary muscles in the arms and legs of infants and children. It's caused by an abnormal or missing gene called SMN1, which is found in both parents of the child.
"For a child with S.M.A. - his leg movement is very uncommon," said Devon Lovelace. "Typically kids with his type of S.M.A. have more strength up top than they do down bottom."
Dakin wasn't diagnosed with the disease until more than six months after birth. However, Doctor Matthew Mayfield says a late diagnoses is not uncommon.
"Many times, it's very apparent that something is wrong with the child at birth," said Dr. Mayfield. "They can have kind of poor respiratory effort , generalized hypotonia or poor muscle tone at birth. But, many times. . . The babies are completely normal and the muscle weakness is not apparent until later in childhood."
Last month, Governor Rick Perry recognized August as Spinal Muscular Atrophy Awareness month, drawing attention to a disease without a cure.
"Can it be cured? I think certainly in the future, and hopefully the future is sooner than we might think," said Dr. Mayfield.
"It is a death sentence - litterally, and I hate to put it so bluntly, but it is," said Devon Lovelace. "That's what these S.M.A. families live with - a death sentence; every single day, and if we could get this funding through, then we could save these children's lives. We could help them."
And, help them before time, for children like Dakin. - runs out.
U.C. Irvine is in the process of moving their embryonic stem cell program into human clinical trial, testing for a cure.
If you'd like to make a monetary donation to the program, visit www.uniteforthecure.com.