Lawton_Cystic Fibrosis is a devastating disease that strikes young children. It is a genetic disease with no cure, and it attacks the lungs and digestive system, so that young children are living with a kind of constant pneumonia, struggling just to breathe and eat.
The treatments for CF are extensive, exhausting, and sometimes aggravating. But with research these children are now living into their 30s and 40s; however some parents say that's not enough.
Some Lawton parents are watching their son slowly fade away, and there's nothing they can do because there simply isn't enough money to research new treatments to find a cure. So the James family is trying to change that.
Seth James was 4-months-old when doctors discovered he had cystic fibrosis. "You don't know how to react, what to expect, what's going to happen," said his father, Kent James. "But we finally, you know, we had our pity party and we finally got over that, because it's not going to do us any good, or do him any good, to keep being sad."
Seth is now nine years old. "This last year has been the hardest year, really, for him," said his mother, Mandy James. "He's been in the hospital twice and we decided to try the IVs at home, which is an around the clock schedule for my husband and I both, and trying to keep up work and the other kids and everything else we do on a normal daily basis and it's harder. But it's harder to be in the hospital and be away from everybody."
His parents treat him like every other kid, but with that attitude, they know he pushes himself too hard. So when his lungs get weak and he starts to choke, they say it breaks their hearts to make him slow down. "We have to constantly think about it," said Mandy. "It does make it more difficult, because it does still set Seth apart. But at the same time we're fighting to put Seth back in the norm. You know, to make him just another kid out there."
Their family works together to raise awareness and money for the Cystic Fibrosis Foundation, and the progress they've made so far has helped supply better medications, more advanced treatments, and genetic tests at earlier ages. So these kids are living longer, "but then they're getting things like diabetes as teenagers and osteoporosis and arthritis," she said.
New research takes money - a lot of it. They've gotten a little help from donations, but CF only affects 30,000 people in the U.S., and is too low in priority to receive government funding. So they're working on their own to raise money, and help Seth live longer. "I wouldn't want Seth to be 40 or 50 years old and not have a life either," she said. "So hopefully with the money that's raised and research, we can get more years. But we can also get good quality of years."
They say they parents should never have to watch a child die; but as long as Seth's story can help another child find a cure, his long fight will all be worth it, and they'll be proud to know their son made it home.
If you would like to contribute to research for Cystic Fibrosis, you can participate in an awareness walk this Saturday, at Elmer Thomas Park starting at 6 p.m.