Local boy overcoming the odds as he battles rare disease

FRESNO, CAlif. (KFSN) -- For most moms, learning of a pregnancy is an exciting time, but for Kerry Rivas it was quite frightening.

"I was afraid to get attached to him because I had lost a baby right before him. At 18 weeks I went into pre-term labor-- the hospital, when I went in, she said just prepare for another miscarriage and I wouldn't accept it."

And Rivas didn't-- for five months, she laid in bed hoping to save the gift growing inside of her.

"I'm going to fight for this baby."

The day finally came-- it was time to deliver. But when Rivas' baby boy arrived, she noticed something was wrong.

"He was literally purple, not blue, but purple-- and then his mouth was just different. I remember seeing this huge big black knot; I just felt something wasn't right."

Doctors however assured her everything was fine.

"They tell you don't compare your children, I wasn't sure but I just felt it was not right."

That feeling stuck with her for months, as her son Donovan cried non-stop, hardly sleeping, and his toes, Rivas says, staying in this usually curled up position 24 seven.

"But the doctor said don't worry, that's normal, when he starts walking it'll flatten out-- but then about four months they realized his head had stopped growing."

That is when Donovan had what is called a craniotomy, a surgical procedure removing part of the bone from the skull to expose the brain.

Still the little boy who doctors said was fine kept getting sick, so the family raised money and went to Johns Hopkins Medical Center.

At just four-years-old they learned he had what is called Shprintzen-Goldberg Syndrome. The disease affects connective tissues and only 70 people in the world have it. Donovan is now 10 and is a NASCAR fan.

"Not a single day goes by where I don't think about being a NASCAR driver," said Donovan.

Looking at him you would not know he has five aneurysms in his heart, multiples holes in his lungs, and intestines that are failing him. But through all the medicine he takes daily to survive, Donovan said hope is what keeps him alive.

"You only find your way by staying positive."

Hope that Rivas is trying to hold on to, especially during moments that nearly break her strength.

"What 10 year old tells his mom, 'I'm sorry I'm such a problem to you-- because I've missed so much school mom--' a 10-year-old should not have to live like that."

But for now, he does and his mom says it is tough because of the pain.

"There's not a day that goes by when he is not in pain, he doesn't know what it's like to be pain free."

The National Institute of Health is doing a study on Donovan in hopes of learning more about this disease and finding a cure.

And his mom tells us the oldest person with Shpritzen Golderber Syndrome in their forties.

For more information on the fundraiser for Donovan click here.